The Den

The hospital bed was delivered to Mom's den.
The den had been the setting for so many parties over the years. Central to it was the bar, designed by my father. It was a classic 1950's cocktail vintage, complete with a purple fluorescent light and a crawl door for the bartender. Throughout the weekends of my childhood, the den echoed with laughter, smelled of cigarette smoke and whisky and resonated with passionate political and religious arguments waged by family members perched on the carefully designed, comfortable barstools, having had, perhaps, one too many Smirnoff vodka martini's on the rocks.

Now, the hosptial bed was central.
We circled the bed.
Bob stared. Mostly speechless.
We circled the bed to spoon the sulfa into his mouth, to hold a straw while he drank from a can of Ensure, to adjust the heel protectors, to search his skin for redness caused by the skin "breaking down", to apply sween cream, to look for any new purples spots caused by the Kaposi Sarcoma, to smooth his hair.

He hadn't walked since the day Matt and I had taken him to the hospital.
His legs atrophied.
His chest remained full and broad, covered with furry grey hair. His face had always been broad and round, like mine, a swoop of hair falling across his forehead. He'd always pushed it off his face with his right hand, fingers spread. Now, it was our job to to comb his hair straight back off his face. His fingers couldn't do the work now. It was easier for us to do it.
His face thinned and his cheekbones and bone structure were apparent.
He looked handsome, with his closely trimmed beard and grey hair and huge brown eyes. Now he rarely wore the thick glasses he'd worn for years.
Even in a hospital gown, in diapers, he had elegance and grace.
One nurse remarked, "What a gentleman."

I guarded him fiercely. He was never to look goofy. Not easy when one can't comb one's own hair or wipe one's own face.
Whenever his hair stood up against his pillow, I combed it down. The pillow was often damp. A head against a pillow sweats. He sweated. We turned the pillow. Perspiration poured out of him. His body wailed through the night. We changed his gown.

The caregivers became family. They came in and out of Mother's house. Rosie and Igor were my favorites. They trimmed his nails. Changed his diaper. Bathed him. Trimmed his beard.

The front door to Mother's house was never locked.

Mother fretted and did laundry. Gowns. Sheets. Towels. The sharp smell of Clorox and Dial anti-bacterial hand wash permeated the house. We followed all directions. Hot water and Clorox. Bleach, food, visitors, and opera on the stereo twenty-four hours a day.

Every Sunday was like an Irish wake. Friends, family gathered. Food. Drink. The den had the hum of a party while Bob slept. We sat with him. Talked to him. Waited for those slivers of time when his eyes would open. We played a video from Mom's 75th birthday. We showed him Carmen. He and Mom watched a video they'd shot in Prague when they'd visited Matt. I tried to read to him but I abandoned that. It felt stilted for some reason. So mostly, we sat. We looked at each other and we listened to opera on Mom's stereo in the den.

I remember one day when I sat on the edge of his bed and stroked his face where it itched. His spastic finger flailed in the air and I knew his faced needed scratching.
I scratched it.
Without gloves.

One day his hand reached gently along the edge of my scarf and I said, "You like that?"
And his forehead rose slightly and his eyelids lifted and a glimmer of yes flashed in his eyes.
"You gave that to me on Christmas," I said.
It was a Burberry scarf. Bob always gave expensive presents.

On another day, he said,
"You smell good."

One Sunday afternoon, Bob's friend, Alice came to visit with Lenny. Alice brought a dozen sunflowers and stayed all afternoon. We played musicals on Mom's stereo - Fiorello, High Button Shoes, Mary Poppins. Lenny and Alice jitterbugged around the bed. It felt like a party. It was a wonderful afternoon. The den vibrated with a desperate happiness.

The weeks were long for Mom and me. Mom paced the house and did laundry. Her impatience would flair every now and then, but it was usually reserved for the hospice nurses. It was usually about the washing machine.

I was in charge. I gave the orders. I insisted on the medicine chart. I enforced the turning schedule. I inspected the diapers, oversaw the changing of linens, the placement of the pull sheet. I examined every detail. Sergeant of the bed.
"No wrinkles in the bed," I would order.
"Be sure the tie on the gown doesn't bunch under his neck."
"Smooth the chux, and above all keep the egg crate dry."

One day, Matt said, "Dad, you want some water?"
Bob's eyes shifted to me blankly.
"Do I want water?" he asked.

( Aria - A Sisters Journey With AIDS to be continued in next post - My Big Brother )

Power of Attorney

Getting Bob's signature for the power of attorney was an act of will, defiance, and mercy. I needed two witnesses so I called our family friend, Mike Kavanagh. He and his father came to the bedside. Mary Loyola, my friend and spiritual advisor, was also present. And standing by was the social worker from the hospital with the paperwork. Bob was incoherent. I spoke to him clearly and slowly and desperately about how important it was for us to have this paperwork in order to take care of his medical needs. With doubt in her eyes, the social worker said she wasn't sure Bob was capable of understanding.

"Bob, do you understand" I asked. He nodded slightly. "He understands," I said, utterly desperate and determined. I put the form in front of him. I jammed a pen into his hand. The pen waved wildly in the air. I looked up at the group assembled around the bed, feeling helpless and panicked. Mary Loyola, calmly and steadily, said, "He only needs to put an "X" on the signature line."

I grabbed his hand. The social worked watched with a look of concern on her face.

"Sign here, Bob," I directed. I pushed the pen against the form and guided his hand to make a faint, scribbled "X" on the line.

The social worker didn't say a word.

It was done.

Bob was released from the hospital to our care on May 23, 1994 - one month to the day after his admittance.

The day before, the infectious disease doctor, Mom, and I had stood in Bob's room. I had asked the doctor what the next step was. He'd taken me into the hallway away from Mom. "Take him home," he said.

"Home?" I exclaimed in horror. What do we do?"
"Nothing," he answered.

I glanced back through the door of the room. Mom sat in a chair looking at Bob. She had not heard my exchange with the doctor.

He then said the words that changed the course of my thinking and altered my understanding of life and death forever.

"If God would be so benevolent to take him sooner than later then that would be merciful."

I stood there, still not fully comprehending what he was saying to me. Finally in that hallway outside of room 603, I said, "You mean, take him home to die."

And the doctor nodded.

Then he proceeded to tell me about hospice and that the social worker would be coming in to see me about making arrangements. We would order a hospital bed. There could be in home care. Home hospice.

I took notes.

(Aria - A Sister's Journey With AIDS to be continued in next post - The Den)

The Hospital

We moved into room 603 at Garden Grove Hospital. Someone from the family was on watch every waking hour. Because Bob had no insurance, I found myself entering a world of government services and programs. This meant swallowing my pride as I stood in long lines answering questions about assets, liabilities, property, and ability to pay. Taking a number, waiting among others in hard chairs on linoleum floors, the coldness of the surroundings contrasted with the warmth of the strangers in whose hands I found myself. Kind, compassionate, understanding - I began to understand what it meant to allow a person to have dignity at the lowest point in their life. Medi-Cal, Disability, SSI opened up a range of services to us. The local AIDS Services Foundation through the Ryan White Act offered more assistance. I was overwhelmed by the generosity and compassion of the social workers.

Humbling. Transforming.

In room 603, we kept a running log of our observations of Bob, questions for the doctors, and instructions for one another so as family members would come and go, we would all be on the same page. Bob's family. His mother. His sons - Matt and Rob. His cousin, Tony. His ex-wife, Peggy. His partner, Lenny. His sister- me. His family. We rotated at the bedside studying his every twitch. These scribbled correspondences, written on scraps of paper were taped to the bathroom door with medical tape. The handwriting looked as panicked as we felt. As desperate.

On a small, portable tape player, music played round the clock. Arias from La Boheme, La Traviata, and Madama Butterfly provided the score for our family opera.

THE LOG
Saturday April 24 - Matt
Questions to ask doctor:
What has been done for him and how's he doing?
What is causing him to shake so much?
When will we get the results from the MRI?
What can we do to make him more comfortable he is so restless?
What will be done over the next few days?
He seems incapable of asking for help. What can be done?

Saturday April 24 - Rob
Infection in both lungs causes some shakiness.
Cat-scan was negative.

April 25 - Matt
Dad seems delirious.
Took blood at 4:30
Treating him for a number of infections.

April 25 - Amy
Matt, talk to Sally regarding how to do Power of Attorney without Bob's signature

1:00 p.m.
Infectious Disease Doctor in.
Not criptococcal meningitus
Possibly HIV in brain so AZT may help
Pneumonia improving. No fever.
Will take him off Adivin to see if he will be more alert.
Good that he does hear and respond with some language
Tremor may come back off Adivin
Tremor may have been caused by sudden withdrawal from Zoloft combined with other meds
Did not eat breakfast
Not TB
Not fungal
Prognosis guarded
Not Parkinson's
Questions to ask doctor:
What is the infection?
Is it treatable?
Shunting procedure - what if he doesn't have it?
What about life support?
Insurance questions - what treatment would you prescribe if he had it? How much money?
What are his chances of regaining normalcy?
Physical therapy?
Ask about foot protectors.

Monday Morning April 25 Observations since 7:15 a.m. - Amy
More alert
Asking questions concerning his condition
Aware of infection
He has sores on his angles and heels
Asked what music was on. Said "think it helps."

9:00 a.m.
Mark from ASF called. Understands the problem regarding shunting.
Is putting urgent on our case to get faster response.
Very warm and friendly.
Requested medical records from the doctor.

9:35 a.m.
Bath
Has foot protectors for heels
Restless, shaking started again

Noon
Talking incoherently
Seems to have a sore mouth have doctor look inside.
Vital - we need his driver's license for medical power of attorney
SS Card
Have doctor sign HIV form today. On table.
Rob/Matt we need to have medical power of attorney signed.
Amy has appointment with medical staff at ASF. Leave all Bob's ID stuff at Mom's so I can take to meeting.
Need bank statements for last 3 months

Tuesday April 26 - Matt
3:00 p.m.
Dad is sleeping soundly.
He has eaten 50% of breakfast.
Social Security Office closed tomorrow.
Day of Mourning – President Nixon.

Wednesday April 27 – Rob
2:15 p.m.
Dad sleeping soundly

3:20 p.m.
The doctors can’t release records without signature (Dad’s) or power of attorney
Wednesday April 27 – Amy
Saw ASF benefits counselor
Will fill out additional forms
Need help with pulling records. Rob can you spare time on Friday morning to help me at Mom’s? Leave message on my machine
Matt – we need set of copies of all his medical records. Call Angelique (sp?) at Laguna ASF office and make appointment with her regarding conservatorship.
Fixed heel protectors.

Thursday April 28 - Matt
Dad is awake but groggy.

6:40 p.m. – Tony
Ate most of his dinner (such as it is)
Recognized me. Even said “Tony”
Resting very quietly
Became pretty alert at about 7:30. He drank 1 1/2 containers of juice.
Had a nice visit.
Amy -The nurse said Doctor Conner called at 6:00 asking for you.

Monday May 2 – 11:00 a.m. -Amy
Sleeping
Amy got medical records, SS card and labs from doctor’s office in Laguna.
Have appointment with SS 1:45 today
If anyone is here, when doctor arrives ask about the shunting. Has he gotten a neurosurgeon? When etc. Also would like to know what Bob’s sense of time is.
What state is his consciousness in daily?

Wednesday May 4 – Amy
3:30 p.m.
Pneumonia much improved
Condition will remain same until we can get a surgeon to perform shunt
Insurance is hold up.
Bob slept all day. Ate a good lunch.
Gary was by.
Amy went to SS today. All forms turned in.
Stopped by court house regarding conservatorship. Looks like we will need a lawyer
Will call legal aid society first.

Wednesday 5:00 p.m. – Peggy
Still asleep

Thursday May 5 - Amy
Very alert at lunch.
Lenny here . Fed him lunch
Gary came
Bob definitely aware.
If doctor comes ask about neurosurgeon and time frame.
Pro’s and con’s of shunting?
Risks after?
If no shunt, what about quality of life?
Life expectancy?

(Aria- A Sister's Journey with AIDS to be continued in the next post - Power of Attorney)

The AIDS Doctor

According to The Body, The complete HIV/AIDS Resource,

At the beginning of the AIDS epidemic, Pneumocystis carinii pneumonia (PCP) was rapidly recognized as the most frequent and severe respiratory invifecion in HIV-positive patients. Between 1990 and 1997, PCP remained indicative of AIDS in more than 15% of the cases.

Kaposi sarcoma, a common cancer among people living with AIDS, was tied to the patients CD4 and T cell count.

Later that day - April 23, 1994

It was 5:30 p.m. The doctor had cleared the waiting room. We were in Garden Grove – a town that in 1994 felt a bit like being on the other side of the tracks. The neighborhood streets in Garden Grove had no sidewalk curbs and plenty of weeds. We were there because Bob had no health insurance. With the crash and burn of our family business, he’d been forced to give it up. Choices are limited for those with no insurance. Sitting in the waiting room with my nephew, Matt, and my brother felt like a cruel irony. As if we needed any further evidence that our fortunes had turned – our hope now rested with a doctor on Garden Grove Boulevard. The three of us sat and waited. Bob’s dementia was becoming more obvious. He babbled on making no sense. It felt like Matt and I were in an absurdist drama. There was a grave air to this waiting room. The door finally opened and out came Dr. Kooshian. One look at the doctor’s eyes looking at Bob told us that he knew what he was looking at even if we still didn’t.
He led us back into the examining room.
The doctor held Bob’s hand.
My eyes focused on the doctor’s hands. Those comforting, tender hands.
Man to man.
With their touch, I got a glimpse into my brother’s hidden world.

Matt answered the questions.
“Is there a partner?” Dr. Kooshian asked.
“Yes there is a partner,” Matt answered.
“Is he positive?”
“No he is negative.”
At least we assumed he was negative. We’d never discussed it. This conversation had moved beyond the boundaries of anything any of us had ever discussed about any of this. A family with secrets. Or perhaps, to be less harsh, a family that honored Bob’s privacy.
A family that accepted what was without judgment. What, after all was there to talk about?
Until now.
A partner of over twenty-five years. Healthy.
We had no way of explaining this. Answering for this. Bob’s dementia had made Matt the spokesman for the family.
“Symptoms?” Dr. Kooshian asked.
The list went on.
“Memory loss, head aches, weight loss, shortness of breath, purple spots on his feet, cramping, unquenchable thirst…”
The doctor examines Bob.
Matt’s eyes meet mine as we watch. We look at Bob. We look at each other. We want answers.
The doctor tells Matt and I to go into his office. Bob stays in the examining room.
The doctor tells us that Bob has pneumonia/ cancer/ possibly Toxoplasmosis/ possibly Meningitis/ possibly TB/ Kaposi Sarcoma.
He defines terms: T-Cells, CD 4 Cells
Matt and I sit, pens in hand ready to take notes.
Matt writes three words and stops.
“Dad has cancer.”

“How long does he have?” Matt asks.
The doctor says anywhere from two years to three months.
And then he asks, “Why did it take you so long to bring him in?”
This is a question we cannot answer.
This is a question we will never be able to answer.
This is a question for Bob. But it was too late for him to answer.
“He needs to go to the hospital immediately,” the doctor said.
“There is a problem,” I say.
“Bob has no insurance.”
So the doctor arranges admission as an indigent.

The hospital is next door. We just need to walk him over. Matt and I take Bob’s arms and slowly shuffle to the elevator.
Bob sucks in air. Exhausted.
We sit him on a couch in the lobby of the doctor’s office and Matt goes to find a wheel chair.
Bob’s feet cramp.
I massage them.
We get to the emergency room 7:00 p.m.
We’re starving. It’s going to be a while. I run to Carl’s, Jr. Bob doesn’t eat. I devour my burger.
Bob’s feet cramp.
Matt takes one of Bob’s feet and I take the other and we massage them.
I think, O.K. now what do we do?
“Bob,” I ask, “where is your birth certificate?” It seemed any time there was official business, a person needed their birth certificate. I figured I would need his driver’s license. His social security card.
Bob’s feet cramp.
Matt holds a Carl’s Jr. cup full of ice to them. The cold helps.
“In my closet in the metal case,” he tells me. A moment of lucidity.
Three hours later, Bob is rolled by gurney to room 603.
The nurse shows him the controls on his bed.
Our walk to the elevator in the doctor’s office would turn out to be Bob’s last.
It would be one month before he was released from the hospital.
(Aria-A Sister's Journey With AIDS to be continued in next post The Hospital)

Stop Time

I worried that Bob would be alone when the doctor called him with the test results. I called the doctor to ask her to wait until I got to him before she called. It was too late.

"Doctor, I don't want my brother to hear the results when he is alone."
"I've spoken to your brother."
"Was it positive?"
"It was. Yes."
"Do you think it is full blown?" I asked.
"I do. Yes."
"How did he take it?"
"I think you should go to him," she said.

I hung up the phone and immediately went to my mother's house.
She was standing in the kitchen as I walked through the door.
“Mother, I have some very bad news.”
“What?” She asked.
“Bob has AIDS.”
I wasn’t sure if she knew what that meant.
“Mom, you know there’s no cure for AIDS. This is a death sentence.”
And so, we drove to Laguna to be with him. It was the beginning of the end.
It was April 22, 1994.

Friday April 23, 1994
I was alarmed the next morning when I called him.
“How are you doing?” I asked.
With a weak, cracking voice he said, “Oh not too well this morning.”

I jumped in my old gray Ford van and drove from Anaheim to Laguna. What if he couldn’t get to the phone to punch in the gate code, I worried. I worried the whole way down the freeway - the 5, the 22, the 55, PCH. The blue green ocean taunted me as I turned at Main Beach. This paradise, this artist’s colony had turned upside down. I now walked in the shadows along the underbelly of Laguna Beach where the sun doesn’t shine.
I got to his gate and punched the code. The phone rang. I waited. It would be the beginning of my waiting. A broken, barely audible voice answered, “Yes?”
“Bob. It’s Amy. I’m at the gate.”
It opened.
I angled my van into one of the tiny condominium parking spaces made for compact cars. Every turn of the wheel a frustration delaying me. I looked up to his window. Oh My God, I thought, who is that frail old man in the brown and white bathrobe? Panic registered in my every move – fumbling to take the keys from the ignition, to grab my purse, to jump out of the car, hurry, hurry, hurry.
I skipped every other stair as I ran up to the second floor. There he was, standing at that window, his back to me. The air was stale. A yellow sunflower grinned at me from its vase on the dining room table. I’d brought it over to him the previous week – an attempt at cheer while we waited for the diagnosis.
I slowly moved toward my brother. At fifty-three years old he looked older than Dad had when he’d died at sixty-four. He turned toward me. His mouth stretched into a long straight line of resignation. It was 10:00 a.m. Our appointment with the AIDS specialist was at 5:00 p.m. My plan had been to bring him to our mother’s house in Anaheim to rest until the appointment. Simple I had thought. It would take me four hours to get him out the door.

He wanted to rest. I took his elbow. The skin under his arm felt soft. Slowly, ever so slowly, his feet shuffled along the floor. Why couldn’t he pick them up, I wondered. Later, I’d learn it was the HIV in his central nervous system. We moved to the couch. He almost toppled trying to sit. My heart ricocheted. Later he would sway at the top of the stairs but that wouldn’t be for a couple of hours.

While he rested, I busied myself with chores. Cleaned up the kitchen, emptied the trash, put water in the vase, put the laundry in a bag to take to Mom’s (where it would stay).
Upstairs I changed the sheets on his bed as if he’d need them.
I checked on him. “Ready to go?” I asked. He wanted to shower. Slowly, ever so slowly, we inched our way a few steps. He had to rest. Shuffle. Stop. Shuffle. Stop. To the bottom of the stairs. He panted. Rest. I brought a chair to him. We’d come five feet.
Another hour.

“O.K.,” I said with the fake enthusiasm of a coach to a hopeless athlete, “Let’s try again.”
Up the stairs. Step. Rest. Step. Rest. I held his elbow in my hand. His feet were purple. I later learned it was the Kaposi Sarcoma. We stood on the landing while he struggled to catch his breath.

What has happened to my brother?

Finally I got him to his room. He flopped onto the bed. He needed to rest. I paced. A controlled panic set in.

I waited. I checked. “O.K. Bob, ready to try your shower?” I asked.
I helped him get up from the bed. Should I help him undress I wondered. No. I can’t do that. Undress my brother.
The bathroom door closed. I listened. If the water ran straight I’d go in. Relieved, I heard the unsteady rhythm of a splashing shower. I stood at the door of the bathroom: what if he falls? How will he get dressed? The shower stopped. Could he get out? How would those spindly, unsteady legs hold him up while he dried off? I waited and listened. The door knob turned. I jumped and ran out of his room. Down a few stairs. I waited. Then I walked back to his door. There he was in that brown and white terry bathrobe, sitting on the edge of his bed. The shower had worn him out. Vacuumed the oxygen right out of him.

I sat next to him. Brother and sister. Shit, I thought. Shit.
“What time is it?” he asked.
I looked at the clock. It was 1:30 p.m.
“Where are we going?” he asked.
I told him. “The AIDS doctor.”
Silence.
Like a doddering old man, he asked me again as if for the first time, “what time is it?”
I looked at the clock.
Time had stopped.
We were on our own time now.
“1:30,” I said.
We repeated this conversation a dozen times.

He dressed and we began the descent down three flights of stairs. Step by step slowly resting, waiting, breathing - we reached the bottom.
I watched him shuffle through the door, my old man brother in baggy pants, and I knew he’d never be back. I hadn’t known that when I’d arrived four hours earlier. I turned to look back at the room. My stomach in a knot, the air still, the sunflower grinning. I picked up the bag of laundry and closed the door.

“Where are we going?” he asked me. “The AIDS doctor,” I said.
“What time is it?”
“2:00 p.m.” I said.
The CD on my stereo played the song “Wilkomen” from the musical “Cabaret.”
“That’s Joel Grey”, he said.
“Yes, Bob,” I responded. “It’s Joel Grey.”

(Aria- A Sister's Journey With AIDS to be continued in next post The AIDS Doctor)

No Turning Back

According to the CDC HIV/AIDS Report Published in 1996 The estimated number of deaths among persons reported with AIDS increased steadily through 1994 (approximately 49,600 deaths among persons with AIDS during 1994)

Perhaps there is a reason it has taken me this long to come to grips with the central story of my life. My brother remains something of a mystery to me. I knew only the brother he wanted me to see. I've spent much of these seventeen years since his death trying to piece together the brother he chose to keep secret, closeted, disguised in business suits and convention. It was his public persona I knew best. The business man. The executive. The publisher.

Yet there was another side that he also shared with me. Big brother. Protector. Fan. Collaborator. He was the brother who drove from Laguna Beach to Los Angeles International Airport to pick me up after my car had been towed from a no parking zone. He was the brother who counseled me, scolded me, and walked me down the aisle on my wedding day nine months after he'd discovered that our father had dropped dead jogging to the office. He was the brother who hired my friends fresh out of USC to write jingles and put on shows at our company parties. He was the brother who never missed one of my plays. The brother who had "Once in Love With Amy" hats made for everyone in our family to wear to my final performance in high school.

Then there was the brother who loved the opera. The brother who left his wife and family to live in West Hollywood and Laguna Beach. The brother who lived extravagantly and squandered the family fortune. The brother we never talked about. Until we had to.

And I was the little sister who was born when he was an eighteen-year-old senior in high school. I was the little sister who was born to replace the three-year-old brother who had died of complications from a botched tonsillectomy. I was the little sister who was born to nurse my brother at his death bed.

Siblings bonded by grief till the end.

APRIL 1994
I had watched him walk to the ATM in Laguna Beach. He looked old. His arms hung limply by his side. His head was thrust slightly forward. His neck, stiff and still.
The head led.
The rest of him slowly followed.
The head would lead all along. Death by drowning brain.
Hydrocephalus. But that would come later.
As I watched him my heart was heavy. I felt sick. My stomach ached.
I’d been with him for the worst of it. I’d driven him to the doctor.
He had lost his appetite and had an unquenchable thirst.
We waited for test results.
Diabetes?
Prostate?
Depression?
Brain Tumor?
Always avoiding the real question.
Aids?
Until the day we ran out of tests.
“Doctor,” I began, hesitantly, “Have all the tests that should have been taken, been taken?”
“Are you at risk for AIDS?” The doctor asked.
On the examining table, my brother’s body went rigid.
His face like the face of a child caught with his hand in the cookie jar. An almost innocent fear. Naïve. Is that possible?
My brother was scared.
I swallowed hard and looked at him. Willing his courage.
He swallowed. Cleared his throat and answered,
“in the past.”
Oh, Bob, I thought, the past is always the risk with AIDS.
He couldn’t simply say yes.

It was his denial that most amazed me.

And so we left the doctor’s office, my brother and I, and went to the lab.
A slow walk down the plank,
our hearts as heavy as his shuffle.
avoiding one another’s eyes.
I handed over the lab order.
My eyes focused on the technician’s white coat.
His eyes met mine. Do they sympathize? Or do I imagine it? “HIV test?” he asked.
The gaunt, shuffling man next to me confirms without a drop of blood
But we pretend not to know.
The technician walks around to the door. My brother slowly walks through it.
“Come in.”
A sterile invitation to death.
I pace.
I panic.
I know.
The door opens.
A band aid across Bob’s arm.
I look at him and he looks at me and we do not say a word.
I take his arm and we slowly make our way down the hall.
Our silence is heavy.
“At least we’ll know,” I say, breaking the silence.
A stupid thing to say. Obvious. Lame.
What could I possibly have said to my brother in that moment?

(Aria- A Sister's Journey With AIDS to be continued in next post - Stop Time)

AIDS at 30 - My Story

I've never been good at reading graphs. But this one is personal. There, on the page of the Los Angeles Times, is a graph beneath the headline AIDS at 30. My eyes scan left to right and land on the year. 1994. Deaths from AIDS in the US had exceeded 50,000. My brother was one of them. And there right next to the column reads 1995: Introduction of highly active antiretroviral therapy. Missed it by that much.

Thirty years is a significant anniversary. The photo of the AIDS quilt on the mall in Washington, DC, reminded me that I never made a panel for my brother. His name is not part of that quilt. The headline over the photo says A mixed picture of AIDS at 30. Again, the headline rings true. I don't think Bob really would have wanted to be stitched together with those other stories. But that is only a guess because, like the quilt, I have had to piece much of this story together.

The story of my journey with AIDS has distracted me for seventeen years. I have journals filled with it. Poems. Essays. A twice abandoned musical. A play. Even an opera. All unfinished. The file box filled to the brim - containing only one certainty. The story inside is my story. Now, as the news is filled with opinion pieces, editorials, moral judgements, and talk of a potential cure, I've decided it's time for me to tell it. Here, on the thirtieth anniversary of AIDS, and ten days shy of the seventeenth anniversary of my brother's death, I begin to tell my story through chapters of my memoir.

ARIA - A SISTER'S JOURNEY WITH AIDS

PRELUDE
Pavarotti is dead.
I wept when I heard the news.
The deathbed and opera.
Music filling the halls of the Alzheimer’s unit.
Gaunt, hollow, chiseled faces.
Pasty white skin.
Sunken eyes.
Lost in dementia,
my ninety- year -old mother’s tiny hand,
like Mimi’s in La Boheme -
reached out to unseen spirits
as her last breaths
escaped
her lips.
I’d been here before.
Fourteen years earlier
I’d watched
as my fifty-three year old brother’s trembling finger
conducted Nessun dorma from Turandot
as his body lay wasting away with AIDS.
The heart wrenching tenor’s crescendo filling the silence
where words had long since ceased.
Opera and the deathbed
Pavarotti and me at the bedside.
Both times.
Amidst mouth swabs and shallow breaths,
Beauty.
And so I wept.
I wept for the opera lovers.
I wept for Pavarotti.
A giant, who
lay wasting away from pancreatic cancer.
And I wondered
Whose voice did he hear at the end?
And I imagined my mother and my brother
Applauding his heavenly debut
And I wept for me.
My mother is dead.
My brother is dead.
Pavarotti is dead.
A soundtrack of loss.

1993
I knew something was wrong. He looked as ashen as the soot that rained down on Laguna that October of 1993. Fires raged and so did his head. It was a bad time. The inferno was closing in on all of us.
Air
Thick with uncertainty
Eyelids heavy
Moist palms slip into each others’
Staring into the void
waiting.
Breezeless day of anxiety
Hanging by a thread.
We look into each others’ eyes
No one to wipe life’s perspiration from our brow
Nor fear from our lips
unspeakable.
Nothing quick.
Slow.
Relentless.
Pressing Humidity
Suffocation.
A cordial march
to the precipice.


It was the early nineties. I was in my mid thirties. My mother was in her mid seventies . Bob was fifty-three.
AIDS, as it has turned, out, was still in its infancy.
Our family business was in a shambles. My father had died in 1981 of a massive heart attack at sixty-four. Bob had taken over. Abandoning my dreams of becoming an actress, I went to work selling yellow pages which was our trade. Emotion ruled. My mother poured their life savings into the dying business. Emotion ruled as we mortgaged the office building. But there was no use. We were buried and times were desperate. As the fires raged in Laguna that October of 1993, our crucible was just beginning.

(Aria - A Sister's Journey With AIDS to be continued in the next post NO TURNING BACK)