ARIA: a sister's journey with AIDS

 ARIA: a sister’s journey with AIDS  By Amy Luskey-Barth

Copyright Amy Luskey-Barth 2016 

(Updated July1, 2022) 

AIDS AT THIRTY

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 judgments, 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.

 

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 bandaid 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?

 

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.”

 

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.

 

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?

 

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.

 

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.

 

MY BIG BROTHER

 

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My brother was eighteen years older than me. Born in Roanoke, Virginia, in 1941, he was a senior in high school when I was born in 1959. I grew up with stories from Bob's childhood - which were essentially the stories of the early years of my parent's marriage. Stories, captured in black and white photographs of a life on the road. My father was a traveling city directory salesman with RL Polk and Company.

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Bob, or Robin, as he was called then, was their first born. A fictitious anniversary date concealed the true circumstances around his conception. This secret went to the grave with my father, uncovered only by a series of innocent questions posed by me to my mother as I put together a "Grandmother Remembers" book for my own children. The truth surrounding my parent's marriage and Bob's birth only added to the rebellious image of my mother and the colorful family mythology that accompanied my father's rags to riches story.

 

The early photographs of Robin tell a story of an only child whose parents traveled throughout the southeastern United States, my father's sales territory, setting up housekeeping in apartments for mere weeks until the directory sales season closed and they moved on to the next town.

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One photograph that always stood out to me was of my mother and father in Virginia Beach. In the photograph, Dad is wearing a fedora, Mother a tailored suit. Dad is holding Robin. It is December 7th, 1941.

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During the war years, when my father was overseas serving in Salisbury, England, Mother and Robin lived in a trailer. They returned to Cincinnati to be near family. Eventually, the little family settled in New Orleans, Louisiana in a trailer park when Robin was school age.

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Bob used to laugh at the sparsely decorated Christmas trees from his childhood captured in the photographs.

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I always thought that Bob had the look of a little French boy in the photographs. Wide eyed in his short suits, his legs starkly white against the dark shoes and socks. It had to have been a lonely life for a little boy though he never said it was. In fact, I don't remember Bob ever complaining about his early childhood at all.

 

In 1949, the family moved to Southern California, to Flower Street in Anaheim, to one of the first post-war suburban neighborhoods, to start their own directory business. They sent Robin, now called Robby, off to military boarding school - blocks away from home.

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This detail is one I never fully understood, except in light of the demands my parents must have felt from starting up a new business. Or perhaps they sent him to what they believed to be the best school available. In any case, the portrait of my brother as a lonely, adolescent boy always tugged at my heart.

 

At twelve, Robby became a big brother for the first time. Jamie Reid was born in 1953.

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The family moved off of Flower Street to a 1950's ranch-style house on Resh Place, built a swimming pool, den, and bar.

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I grew up with home movies of pool parties and fun.

 

Tragedy befell the family in 1957, when Jamie died from a botched tonsillectomy. Robby was fifteen.

Stories of my mother throwing herself across Jamie's coffin and driving with his sweater in the back seat of the car only reinforced the image I had of my brother Bob's lonely life - now as the surviving sibling.

 

At Mater Dei High School, he wore horned rimmed glasses. He wrote for the Anaheim Bulletin Sports page covering high school sports. He developed a love for the opera. He met his future wife, Peggy. I was born his senior year. By then, he was called Robby only by aunts, uncles, and cousins. My father called him "son." I only knew my brother as Bob.

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My earliest memories of Bob were those of a baby sister being happily tossed around by my big brother. He tickled me, teased me, and kissed me. He made monster sounds and grabbed me while we watched spooky movies. When Bob joined the National Guard, we visited him on trips to Fort Ord in northern California.

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I adored him and developed crushes on the fraternity brothers he'd bring home from Theta Chi at USC.

And I was jealous of Peggy.

 

When I was six years old, Bob and Peggy married. I had a loose front tooth that my mother would not let me push with my tongue so it would not fall out before the wedding. I was the flower girl in a velvet, avocado green dress.

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After a brief time in an apartment and the birth of my first nephew, Rob III in 1966, Bob and Peggy moved eight houses away from us on Resh Street.

Bob worked for the family business. In 1968, my second nephew, Matthew Christian was born. I loved being at their house. So close in age, my nephews were like brothers to me.

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Peggy played games, talked to me like I was a grown up, let me climb trees in her back yard, and cut sandwiches into the shape of sail boats. It was magical. Where Peggy's prominence in my life took over, my brother grew more distant. More mysterious.

 

This time in my life was a confusing one. The adults whispered at the bar in the den. I was shooed to bed by my mother who seemed particularly cross.

 

In one short -tempered outburst she scolded me in the same breath as she blurted out that Bob and Peggy were separated - "Don't you know that?"

 

I did not. Nor did I want to believe it. I snuck into Bob and Peggy's bedroom and opened their closet. There were no men's clothes. I remember being heart broken and asking Peggy if she would still be my sister-in-law. She assured me that she would.

 

Bob moved to Laguna Beach with Lenny.

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Peggy and the boys remained on Resh Street. Bob was always present for all the family gatherings - birthdays, Christmas Eve. He normally came to our house for Christmas dinner without Peggy or the boys. He never stayed long enough and Christmases were always fraught with tension. My parents fought. There was an unspoken sadness. It seemed to weigh heaviest on my father.

 

A burden fell to my brother on August 17, 1981 when our father dropped dead of a heart attack while jogging to the office. Bob was just arriving to tell Dad about his trip to Roanoke, when he discovered him flat on his back just inside his office door. He delivered the devastating news to my mother and me and then Bob took over the family business and assumed his role as head of the Luskey family. Nine months after my father's death, Bob walked me down the aisle to be married.

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Bob remained one of my greatest cheerleaders. As my theatrical talents emerged, he delighted in my performances. My room was full of clever, expensive presents - a brass bed for my role as Molly Brown, an etching of Sarah Bernhardt, and beautiful music boxes that played familiar tunes from the musicals I loved.

 

Bob shopped in the quaint shops of Laguna Beach. Our houses were full of local artisans' work, funky tie died scarves, and cut- crystal jewelry. We were awash in leather bags and luggage from the shop he and Lenny opened in Laguna - named for the aria in Madama Butterfly - Un Bel Di.

 

Easter brunches, fancy dinners, trips to the theatre and the opera followed by late night, expensive suppers - Bob's joie de vivre enlivened our existence.

A big bellowing laugh, quick wit, and sharply critical opinions emanated from any table he hosted. He rose to great heights as a directory publisher, industry leader, and sales trainer. It was during this time, shortly after my marriage, that I became Bob's collaborator and business partner of sorts. I joined the family business to help him. We worked together on developing a sales training video series that was widely adopted by independent and utility yellow page companies alike. He mentored me. Trusted me. Depended on me.

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He loved taking us all to the opera . Peggy, the boys, Mother, Lenny, and me - where we would dutifully stand in the lobby while he told us the complicated plot lines of the elaborate stories. He flew to New York regularly during opera season to attend the Met and traveled to Europe on the QEII. My brother looked handsome in a tux and demonstrated the manners and grace of a cultured gentleman. Custom-tailored suits to fit his square build completed the picture of a successful executive and patron of the arts.

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Bob was extravagant. The extravagance caught up with us all as the yellow page industry began to falter and the economy began to plunge in the late 1980' s.

 

Just as the AIDS epidemic began to take its devastating toll on the gay community.

 

BROTHERLY LOVE

 

Toxoplasmosis is the most common infection of the central nervous system in patients with acquired immunodeficiency syndrome. The classic presentation is that of a single or multiple focal lesions with mass effect. Hydrocephalus due to cerebral toxoplasmosis is a very rare condition with headaches, dizziness, gait disorders, weight loss, and intermitten chronic diarrhea.

 

Where did the words go? His memory drowned. His brain flooded with infection. No power of speech. No expression in his face. His once vibrant eyes had lost their sparkle. Nothing danced. Mouth agape, he trusted me with his thoughts and left me speaking the words he could not say. Would not say. Never did say, even when he could. HIV – three letters bonded us. Blood brother. Eighteen years my senior. I was his sister at last.

 

I read his face with my intensely focused gaze. A Braille-like sign language only I could speak. It was subtle, silent, slow, hidden. I watched his eyebrow. It could talk. From his bedside I interpreted its movement. Up a little meant yes. No movement meant no.

I tested his lucidity. “Where are you?” I asked.

Ever so slowly his eye would reach up to the left corner in an attempt to remember.

“I’m in upstate New York, I know that.” He responded.

My heart sank. In the den of our Mother’s California home, I patiently, calmly, desperately tried to sift out the tiniest speck of thought. Of memory.

“What year is it?”

“1985.” It was 1994.

“Who is president?”

“Jimmy Carter.”

“Where are you?”

“At Aunt Angeline’s.”

“What year is it?”

“1956.”

On one occasion he looked worried.

“Are you wondering something?” I asked always with the undaunted belief that one of my questions would liberate him.

“I’m wondering…” he paused. I waited, urging him to complete his thought with my nod.

“Whether or not,” he continued, “I’m pregnant.”

Stunned, I looked down at myself and the absurd conversation I’d been carrying on. I cringed with embarrassment at my own denial. Denial: the accusation I was so quick to heap upon him for not taking the test sooner, for believing it was depression, for waiting too long, for not having insurance, for the unopened video tape, “AIDS What is it and How do you Get it?” In that moment, I was slapped in the face. There was a fine line between false hope and denial.

My brother was dying of AIDS, but denial was what was killing him.

Without flinching, I said to my fifty-three year old brother, executive, businessman, publisher, mentor, trainer, teacher, salesman and opera lover -

“No Bob. You are not pregnant.”

And with a relieved sigh, he said, “Good.”

I leaned over and kissed him on the forehead and walked away. I hadn’t realized that, for as long as it had taken him to formulate that thought, I had been holding my breath. I heaved my own sigh as I reviewed the pathetic scene in my head.

My brother who could not remember, could not use words effectively, could not control his bowels, could not sit in a chair, could not scratch himself where he itched, could not hold a pen, could not turn himself, could not lift his leg, could not bite a sandwhich, could not wipe his face with a napkin, could not remember what his glasses were or what they were for –

And me, whose life had become turning schedules, medication charts, night sweats, HIV, AZT, Diflucan, Mycobutin, Sulfa, Sween Cream, Periwash, diapers, chux, attends, pull sheets, keeping the egg crate dry, bending his leg when I rolled him, wiping him, bathing him, brushing him, shaving him, stroking him and guarding him against the indignity of it all.

Only one day did he cry. It was when I returned from seeing Andrew Lloyd Weber’s musical, SUNSET BOULEVARD. I came to his bedside with the program, ready to begin my critique anxious to share with him my conceptual differences with Trevor Nunn, the director. Bob’s face twisted. His eyes grew wild, panicky, and filled with tears.

“I wanted to see that,” he said. “There’s still a chance I will have the opportunity.”

“Yes,” I lied. “There’s a chance.”

 

We listened to musicals and the opera that Sunday afternoon at Mom’s. My brother who couldn’t remember the year, could remember every word to “I Still get Jealous” from the musical HIGH BUTTON SHOES and could name every aria we played. I sang, “Papa Won’t you Dance with Me” and my brother’s trembling hand conducted.

 

 

At the end of the day, my face close to his, I whispered, “I love my brother.”

And he said,

“And he loves you.”

 

HOSPITAL BED OF HONESTY

 

We were a family with our share of secrets.

Until the day I took my brother to the doctor and asked if all the tests that ought to have been taken had been taken, Bob and I had never discussed the fact that he was gay. Our family danced around this truth my entire life. Denial of catastrophic proportions, a dissolved marriage, two sons left to sort it out, a life partner HIV negative and a sister, eighteen years younger, left to tend to the deathbed. I was angry. The doctor had presented us with an option to shunt Bob’s brain. A tube would be inserted to drain the fluid that was creating the pressure on his brain. Relieving the pressure, might possibly restore Bob’s ability to communicate lucidly – for a while. The fact that Bob had no insurance was an issue. So the doctor concocted an elaborate plan for us to take Bob into the emergency room in the middle of the night when they could not refuse treatment. The idea seemed far -fetched but we decided to talk it through as a family. Although the doctor could not guarantee the results, the most positive outcome could give Bob a few more months. His condition would be uncertain. He could be blind. It might prolong his suffering. The family gathered in Mother’s living room to discuss the pro’s and con’s of the shunt as Bob lay in a hospital bed in Mother’s den unable to speak for himself.

We sat in a circle. A complex, family portrait. Mom sat on the couch. At seventy- five, she had already buried one son and her husband. How she was able to withstand this agony was beyond me. And there were Bob’s sons, Matt and Rob sprawled on the living room floor. And there was their mother, Peggy, seated next to her partner, Linda. Bob’s partner, Lenny sat by Mother. And my husband, Steve, who would continue to carry the mantle and burden of a family business left in ruins sat, quietly supportive with me on an oversized footstool. With a steady hand and just enough distance, Linda, facilitated the discussion and counted the votes of whether or not to go ahead with the shunt.

We talked as if we could bring him back. It was tempting. He’d slipped from our grasp so quickly and suddenly. If we could only have another chance to talk, to hear him laugh, to see his eyes sparkle again. But what would he do with more time with AIDS? His mind was flooded with infection. Drowning in fluid from the hydrocephalus. If he slips into a coma, then what? No food, no water? Or do we bring him back from this death- like dementia?

We voted on whether to shunt his brain or not.

Lenny voted no. Mother voted no. Matt examined the choice. What might his father do with more time? Rob wasn’t sure.

Mine was the only yes vote. Yes, I thought, bring him back. Let me talk sense with my brother just one more time. Let me take him to the opera one more time.

A selfish vote. I wanted my brother back.

The family agreed not to shunt. It was a vote for death.

 

The next morning, to my surprise, Bob awoke alert. I looked into his eyes. We decided to let you die, I thought to myself. Do I tell him? Do I ask him?

“There is an operation,” I began, “that might give you more time. But we don’t know whether you would walk, or talk. The risks are blindness, deafness, infection, incontinence…none of us know how long we will have here on this earth, but what we do know is that every moment we have with you, Bob, is precious.”

My insides were raw.

What is your vote, brother, I thought. Please make the decision so that this does not rest on our shoulders. I look into his eyes, “Do you want to have the operation?”

“I suppose not,” he said.

I stroked his face.

We were exhausted. Lenny, his friend from New York, Murray and I sat by the pool as I agonized over what to do. It had all gotten to be too much. We had decided for Mother’s sake, we had to move Bob out of the house. It had been a constant revolving door of nurses, caregivers, social workers, friends and family. The nights were long. Bob’s night sweats meant his gown and bedding had to be changed through the night. Mom wasn’t sleeping and neither was I. The decision was made to move Bob to a hospice.

LAMENTATION OF THE DAYS

 

Journal entries May 23, 1994 - May 30, 1994

 

Holy

Holy

Holy

are these days.

 

These days of ache, of tears, of purging grief

of love.

 

Oh to cradle you, to rock you to your death

Oh my brother

 

My heart shouts. Bursts. Scared of what wil die with you.

Oh my brother, how I longed for you in my life.

How I long to be your sister.

I will be

your ears

your mouth

your brain.

I will listen

to your eyes and I will speak

what I know to be your heart

if you will let me.

 

A whisper of you.

Tender

Tender

Brother of mine.

 

These days of staggering generosity.

Teaching me humility.

Teaching me to let go.

Teaching me to accept.

Teaching me to say thank you.

Teaching me what love is.

 

Conversations with my brother

Slow

Steady

Peaceful

Quiet

Reading his eyes

When they close, when they tear, when they drift, when he is engaged, when he is engulfed in music

 

I want to remember

Our talking

Our laughter

your rapid fire delivery at a podium, at the dinner table, at the bar

your voice deep and resonant

your creative mind

your sense of humor

your point of view

your leadership

your stride

your feet turned out slightly as you walked across our office

your delight

Ordering a Smirnoff Vodka Martini on the rocks with one olive

Sipping a glass of Cabernet

Listening to the opera

Wearing a sweatshirt

Wearing a suit

Calling me honey

 

All of this halted.

Now, mouth agape, trapped

All I ever knew of my brother is gone.

 

His arms are thin.

His limbs are rigid.

Oh God to realize these days

these days

each one.

 

Oh my brother

My brother

How precious are these days

 

Those days in Laguna

Those slow, slow days

I did not know.

 

Count down.

The doctor says a month at most.

If he were conscious, I wonder what my brother would do with a month?

What would any of us do?

I am exhausted.

What more do I need to say to my brother?

Here is a chance to say everything and at this moment I can't think of a thing.

So I will sing.

Sing.

Sing for my brother.

 

DENIAL

 

By 1994, Laguna Beach, the artist colony that had once prided itself on being a safe haven for gay men, had been ravaged by AIDS. It felt like a ghost town.
According to an article in the Los Angeles Times on June 16, 1993, the percentage of AIDS deaths among the male population in Laguna Beach was 78% .

 

When Bob was released from the hospital, we'd decided to bring him to Mother's house in Anaheim instead of to his condo in Laguna Beach because Lenny was dividing his time between Laguna and Las Vegas. Lenny's mother had just died the month before and his father was in ill health. It made more sense to bring him to Mother's. She only lived two blocks from me and the house was on one level. Bob's condo had three levels.

Lenny visited on the weekends.

 

Lenny, Bob's partner of twenty-five years, companion, and friend, had already nursed several friends at the hour of their death. He chose not to do that for Bob.

This angered Mother. It puzzled me but on some level I understood it. The complexity of our family, the unasked and unanswered questions about my brother's private life now put on display as he lay dying of AIDS in Mother's den was too much to bear.

 

There was no one to blame. Each of us bore responsibility for the silence we'd kept. Now all that mattered was loyalty.

 

There is a fine line between denial and loyalty. Loyalty to family can lead to secrecy and lies. I knew there was something wrong with my brother in October of 1993. But I chose not to say anything. Partly out of fear. Partly out of respect. Partly out of loyalty. Partly out of denial. After all, I was his little sister. We'd never talked openly about Bob's sexuality. He wasn't exactly "closeted." He did after all live in Laguna Beach with Lenny.

But it was Bob's life. His choices had caused pain for his family but he was, after all, entitled to his choices. No one judged him.

As Mother would say, "Live and let live."

But now, Bob was dying and AIDS was forcing our family to face its denial for the first time.

 

In the closet of my brother's bedroom in Laguna Beach, I found a video tape entitled "AIDS what is it and how do you get it?"

 

It was unopened.

 

 

THE LAST DAY AT HOME

 

His last day at home he had his eyes opened some of the time. He didn’t speak. I was there all day. Peggy came. And Rob.

I remember sitting on the edge of his bed, crying.

He just stared at me.

He lay there, La Boheme blasting Rudolpho’s aria about Mimi’s cold little hand.

I played every record album he loved.

La Traviata

Faust

Carmen

Il Trovotore

Aida

Madama Butterfly

I played Mary Poppins and High Button Shoes.

I wanted him to hear every piece of music he loved.

And I wanted him to hear it in our mother’s den.

That den where so many parties had taken place.

Where those records had been played over and over

Where he and I never put them away

Where toasts were made to ring in the new year, on birthdays, graduations, opening nights and closing nights, and where he now lay in his hospital bed.

 

I rolled his bed out onto the porch by the pool in the yard.

Expressionless, he stared.

Could he think? I wondered.

Did he keep his eyes open that day because he wanted to talk?

Weren’t we talking?

The music – our eyes – my tears?

I poured the music into him as my tears poured out of me.

His last day at home.

 

Mom sat by him,

a mother losing a second son. I didn’t know how she endured it.

I stepped away briefly from the bed

When I came back he was still staring and Mom was still crying.

And then the most amazing thing happened.

He looked at Mom who was looking away because she couldn’t stand it any more

And I was staring at the two of them, and I saw

his lips, without a sound, slowly mouth a single syllable –

“Mom.”

 

I believe it was his last word.

 

I saw it. She did not.

Certain words are unmistakable.

The word “mom” silently spoken is very clear. The lips close gently

Open for a split second to form the vowel and close again.

The gentleness of the moment

Delicate

This word

This moment

This silence

Sang out over the aria being played.

In that moment

My brother lived.

And I watched my mother saying goodbye to her son -

Her son whose last word, I believe,

Was “Mom”.

 

The ambulance arrived about three o'clock in the afternoon to pick him up.

As Bob was wheeled out of our mother’s house, his favorite opera singer, Jussi Bjorling blasted in the background.

 

THE HOSPICE

 

On Wednesday, Matt and I spent the night with Bob at Orange Grove Hospice.

Bob snored.

Thursday, the hospice volunteer came to give him a bath.

She tenderly washed him. Her hands were loving and gentle.

She called him, sweetheart.

He was so thin. His face gaunt and gray.

He reminded me of the body of Christ.

The hospice nurse listened very closely to his heart through her stethoscope.

I remember her laying her hands on his legs and on his feet.

I remember she lifted his lids and looked into his eyes.

They did not dilate.

I stood – staring-waiting for her to tell me.

Was he in a coma?

This was the question of the morning.

She pinched his neck. He did not respond.

She nodded.

I nodded.

“How long?” I asked.

“He’s close.”

“How close? Days? Weeks? Hours?” I’d never seen death before.

“Hours” she said.

Oh my God, I thought. What should I do?

“What should I do?” I asked.

“Call your family.”

 

THE VIGIL

 

And so our vigil began. A family gathering. Rob, Matt, Peggy, Lenny, Mom and me. Rob asked if he could bring his girlfriend, Joanne into the room. We said yes. Joanne carried in a box of chocolate chip cookies lined with foil and then sat a respectful distance from her future father-in-law who would never know her. It was staggering, all that Bob would not know. Two daughters-in-law, six grandchildren, the internet. At fifty-three there was so much future ahead.

 

The hospice room had two beds in it, a sliding glass door which led onto a patio and typical hospital furniture. We moved in. I brought chairs from home, a photo collage, sunflowers, Bob’s tape player with his opera music, an ice chest filled with beer. As the night wore on, we lined the wall of the patio with the beer bottles. We prayed Hail Mary’s. Visitors came to the door to say goodbye. Fr. Peter administered the Sacrament of the Sick. We sang Be Not Afraid.

We prayed the Hail Mary over and over.

Holy Mary

Mother of God

Pray for us sinners

Now and at the hour of our death

Amen

 

2:20 p.m. Journal entry

The nurse tells us that we are very close.

His coloring is very pale.

His breathing is irregular.

I wonder why it takes so long for the body to die.

Il Trovotore is playing.

His legs are bluish – especially his knees. His feet are ice cold. His hands are still warm. We must die from the feet up.

We are all shifting around the room. Mother never leaves the bed.

His eyes are slightly rolled back.

Mother just sits and looks at him. Another labor

 

Rob is taking care of Mom. He is attentive and gentle.

Matt is flailed on the cot.

Lenny and Peggy sit on the patio.

Steve brings us food then goes back home to be with Gillian and Brendan.

Someone needs to be there for them. I’ve not been much of a mother these past few weeks. I wonder if they will remember their Uncle Bob before he was sick.

Brendan just graduated from kindergarten.

Lenny left to be with his support group. Now it is just Peggy, Rob, Matt, Mom, Joanne and me. Waiting.

What are we waiting for?

No. We are waiting with him.

 

 

4:20 a.m. Journal Entry

Is this the death mask?

His hands are cold now.

I feel him leaving.

His face so gray, so narrow –

There is a cold energy mass vibrating just above his body. I wonder if it his spirit? His body is ice cold. The coldness keeps moving up – his head is still hot.

 

4:30 a.m. Journal Entry

Peggy decides to massage his chest to make it easier for him to breathe.

We beg him to go. His breathing begins to slow.

He thrusts his tongue, parched, cracked, hideous mouth and gives a shallow weak cough.

 

LAST BREATH

 

My brother died at 5:07 a.m. on June 10, 1994. Rob said people often die at dawn so not to have to face another day. He was right.

Those breaths. Those last breaths. Breathing labored for so long.

So many hours of up down up down. Of watching a chest go up down and waiting for the breath to stop and wondering how it would be. How does one take the last breath? And we sat and watched and stood in a circle around the bed. Around a body so cold and purple that it was hard to imagine he was still alive and yet he was still breathing and yet so resembled a narrow, pointed, grey corpse. And the breath, relentless and fast as if he were running a marathon - Oh God and wasn’t he and we wanted to relax him so his breathing would be easier, calmer, quieter it was so loud and frantic . Pounding its way through the long night of vigil what were we waiting for?

His last breath.

We wanted to be there and to see it and, to what? Hear it? We so curious and loving, wanting to be a part of every aspect of his life, we had to see his death. How does one die?

Now as I remember those last breaths, he slowed. It slowed and his body so cold and purple I could no longer stand to hold his hand but I did

And I stared at his chest and his face and his breath grew into shallow exhalations

As if he were a fish out of water.

Was he suffocating? Being robbed of the breath? Or was he letting go of life?

He drew in his last breath after a wince and began to suck, almost vacuum in the air

Bottom teeth showing.

It was strong and loud and tight and desperate.

And then he exhaled. And as the breath left his body, the color left his face - from his chin up over his lips and his nose, his cheekbones and eye sockets and forehead and he turned a waxen yellow as his face collapsed around the chiseled features of his bones. And I held my breath as with that one breath, he expired. Perfect word for what he did. Expired. And then I gasped. Mother sighed. And Peggy said, “He’s passing.”

And then it was so quiet.

Breathing that had been so labored . Laboring for what?

To give birth to his spirit? And then there was peace.

Oh God the breath that was the focus for so many hours and the heaviness of that time. My heavy heart, carrying the breath. I tried to breathe for him. I did.

I sat and breathed trying to make it easier.

Breathe.

Breath.

And in fact there was relief.

 

GRATITUDE

 

It has taken me seventeen years to complete this portion of my memoir. It has gone through numerous stages – beginning with the raw outpouring of emotion in my journal. Sometimes wildly scribbled on unlined and lined pages, it first began to take form during a writing workshop I took in Idyllwild, taught by Cecilia Woloch, the summer my brother died. I have Cecilia to thank for first drawing the story out of me and then, fifteen years later, editing it. I owe it all to Cecilia, for affirming me as a writer.

 

The journal became a collection of individually typed essays and poems. As a theatre director, I began a collaboration with a colleague and friend, Chris Winn, who set some of my poems to music. Over four years, we created two theatrical collages during the Lenten season at two different church communities, St. Matthew Church and St. Paul Lutheran Church. I have both those faith communities and the individuals who publicly gave voice to my words to thank for believing and supporting what was still an embryo of an artistic creation. As a writer, I was still not sure what form the story should take. Should it simply be a loose collection of poems and essays? I even flirted with turning it into a play, a musical, an oratorio, and an opera.

 

As the years passed, my spirit began to heal. With the passage of time came an aesthetic distance. I tucked the pages of my unnamed work away in a binder, in a filing cabinet, in a box. I moved four times between 2003 and 2007 and each time, the box came along – tucked up in the garage or under my desk. Most of the time it stayed unopened.

 

In 2005, I began teaching a personal journal writing class to older adults through the community college district continuing education program. My journey with this incredible group of writers sharing their life-long lessons of grief, loss, joy and sorrow was inspirational. Their generosity of spirit put my own story into perspective. I came to realize that while my journey was particular to me, it was not unique. Grief is a natural part of life. On the day that my mother passed, March 20, 2007, I spent the evening with this group of writers at a reading we had organized months before. There was nowhere I’d rather have been on my first night without my mother than with them. I watched the audience respond to their stories and I knew that in time, I too would need to share mine. It has taken me seventeen years to name this work as a memoir.

 

While I wrote this memoir out of my grief and revised it out of my artistry, it is first and foremost for my family. For my nephews, Rob and Matt, my brother’s sons who are as close to me as brothers themselves. It is for their wives, Joanne who entered our family with a platter of cookies on the night Bob passed and it is for Marisa so that she may know the story.

 

In my classes I often quote, “Our life is our journey, our journey is our story, our story is our legacy”… it is my hope that this story will one day provide my brother’s grandchildren, Hannah, McKenzie, Elise, Reid, Madeleine, and Jacob an understanding of their fathers’ courage and a glimpse of the beautiful complexity of our family and the legacy of love left by their grandfather, Bob, whom they never had the chance to meet. It is for their Nana, Peggy, who is and has always been the closest soul mate in my life. It is for Lenny and Linda - each whose place in our family tree is firmly rooted.

 

I have often lamented that at forty-eight years old, with the passing of my mother, I became the only survivor of my family of origin. This is a difficult concept for me to grasp and in time I will come to accept it. But I am also aware that my nuclear family is my family. This is for my children, Gillian and Brendan who have grown up with this story and are the most important part of my family’s story. And it is for the person who completes me - my husband, Steve, the steady and able captain of our little ship for whom no words are adequate. We all owe him a debt of gratitude for getting us through. I owe him my life.

 

I have many other people I wish to thank for companioning me through various parts of this journey. In particular, I would like to acknowledge my friend and spiritual advisor, Mary Loyola for being their at the hardest times, to Celine Miller who rescued me from the depths of depression and generously counseled me during some of my darkest times, to Gayle Hartell who mid-wifed me into being and to my life-long friend, Mugs for being herself and for giving me Cayucos. And to my many friends and colleagues who’ve supported me along the way over the years – Mayo Crismon who is always the first at the door in times of heartache, Susan Wuerer for her creativity, Tricia Homrighausen for being the vessel, Judy Jones for her faithfulness, Mary Barth for being a sister, Katie and Tony Bomkamp for their tenderness, Camie Booker for being at my mom’s bedside on her last day, Diane Bock for her perspective, Teri Rice for rescuing us, Ellen Wright for showing the way, Susie Smith for being my oldest friend, Deb Langhans for her honesty, Kathy Cleary for her generosity in my early days of grief, Virginia and Dan Knowles for their compassion, Darcy Rice for his support of my writing, Michael Kavanagh for being my kind “God-brother”, Giovanna Piazza, for her wisdom, Laurie Julian for her spirit, Corrine Bailey for first breathing life into these words, Peter and Mirella Hickman for their loving, prayerful support, Cindy Warden for making my dream come true, Randy Hills for our partnership and especially to Chris Winn - for the music, for the music, for the music.

 

This story is meant to be a loving tribute to my brother, Bob. Since it has taken me so long to finish it, I have matured and gained perspective over the years. My writing process often mirrored the stages of grief, remaining in the anger stage for a very long time. I can say with certainty, that I no longer have any anger – only compassion, forgiveness, acceptance, and appreciation for every part of this story, written, and unwritten. The title, Aria – seemed only fitting for a beautiful, tragic story that took on operatic proportion in our family. While through most of this story, Bob’s voice was muted, it will always sing out in my memory.

Finally, I wish to salute my mother, whose courage and strength in the face of tragedy and loss may be the greatest legacy for us all. When I asked my mother years later how she was able to endure watching Bob die, she told me, “I’m just glad I could be there for him.”

 

POST SCRIPT

 

MESSAGE TO THE CAREGIVERS

 

I never thought I’d know my brother. I never thought it would come in the last month of his life. I never thought I could do what I did. I never thought I’d recover from it. I never thought I’d be a caregiver. Death put everything in perspective for me. I know now that it is not the great, profound experiences that give meaning to life, but the tiny moments, the slivers, the details. The paying attention. The caregiver’s life is full of details … most of them unpleasant. Where does the strength come from to do what must be done?

 

When everything I had named as “quality of life” and relationship had been stripped to the core as my fifty-three-year-old brother lay helpless in bed, dying of AIDS - incontinent, unable to turn himself, scratch himself, feed himself -my life became nothing but the details. It was the easiest thing I had ever done. It was the hardest thing I will ever do.

When the need is real, the job is clear. Not profound. Basic and real. When my brother’s hair needed combing I combed it. His pillow as often damp. A head against a pillow sweats. He sweated. I turned his pillow. I grew to love his body with my care. Instant intimacy. He stared while I circled the bed. And somehow, through those days of watching, of waiting, of tending, the days mattered. Moments counted. Time was finite. There was a clarity and focus. The death bed dance. Days of ache, of tears, of purging grief; teaching me to let go; teaching me to accept; teaching me to say thank you; Teaching me to live. Teaching me that we are all capable of more than what we think.

 

GRIEF – MY MUSE

 

The wither'd frame, the ruined mind, the wreck of passion left behind:
A shrivell'd scroll, a scattered leaf,
Sear'd by the Autumn-blast of grief.

 

Byron

 

I sang for Bob's memorial service.

His fraternity brothers flew in from all over.

When we played the duet from Bizet's opera The Pearl Fishers,

they looked grief-stricken.

Cards, letters, tributes poured in.

The Artistic Director from Long Beach Opera, Michael Milenski, delivered the Eulogy.

Bob's Cremains were placed in Jamie's grave.

Mother tossed a rose into the hole where her two sons had been laid to rest.

 

Mom's den was put back in order. The hospital bed was gone. The couch was moved back into place.

Gillian and Brendan swam in the pool.

It was summer.

 

On the television, OJ Simpson's slow chase in the white SUV dominated the news.

Jackie Onassis had died May 19th.

Richard Nixon had died April 24th.

I had missed both news stories.

 

We cleaned out Bob's condo in Laguna. As I sat on his bed, I held the unopened video tape, AIDS What is it and How Do You Get It? I remembered the day I'd gone down to his condo to bring him to the AIDS doctor. He had given me a list of names of people to call. He spoke of various friends and family members.

"He's a prince," he said to me about our cousin, Jimmy. He told me to call his boyhood friend, Gary. The list contained the names of people Bob had worked with in the yellow page industry.

"There's no reason people shouldn't know, " he said.

As I thought back on that exchange, I realized how remarkable it was.

 

 

Exhaustion set in. Aids Services Foundation sent their bereavement team to check on us. They told us about grief counseling and said to call if we needed it.

I tried to return to my life as usual

but the heaviness of grief made everything harder.

I was barely functioning.

 

Three months later - I couldn't get out of bed.

Overwhelmed with grief, I called ASF, who referred me to a grief counselor.

After one session, she recommended I come twice a week for six weeks.

I kept going to her for two years.

I went to a support group made up mostly of mothers who'd lost a son to AIDS.

 

Mostly, I wrote.

I filled journal after journal.

Writing became my salvation.

My healing.

 

HIS NORMAL HEART

 

Today is the twentieth anniversary of my brother's death. In a twist of irony, I spent last night watching the HBO movie version of Larry Kraemer's play, THE NORMAL HEART.  I was destroyed by the end of it. The spotted  men. Walking skeletons. The anguish. The indifference. The courage. The injustice. At least by the time Bob was diagnosed in 1994, there were medications, funding, support services, and scientific data. For those first stricken with the "plague," there was nothing but the loyalty of friends and the compassionate, increasingly angry voices of activists who worked tirelessly to bring attention to the epidemic. Twenty years later, my story fits into the larger epic of the AIDS story, like a piece of the quilt.  So much has changed in those twenty years. Now people live with HIV thanks to the "cocktails" and medical advancements. Magic was diagnosed before Bob. He has lived a full life. There is a reason that my brother is dead and Magic is not. The social stigma that accompanied the diagnoses, captured in The NORMAL HEART had to have played a part in Bob's fear and unwillingness to seek treatment earlier. I believe now, twenty years later, that my brother thought he had too much to lose. It was unimaginable for a man who, while not closeted, lived a very private life. We never spoke of  "it."  It wasn't until I walked him in to the hospital to get the test that we ever even acknowledged anything about "it." In fact, we never did say anything to each other about "it."  The only words I said was "Well at least we'll know."  Whether shame or embarrassment were part of his silence, I'll never know.  I only know that for me it was the most intimate conversation I'd ever had with my brother. I have been writing this story now for twenty years. Last night, the realization I had, thanks to THE NORMAL HEART, was that my brother was scared.

But unlike so many of those poor guys in the early 80's who faced healthcare workers in space suits, and whose bodies were tossed like rubbish into trash bags, my brother died surrounded by his loving family who held his hands, gloveless, and kissed his face and mopped the perspiration from his forehead and sang to him as he labored to leave us.  There were few words spoken between us about "it."  I believe that made it easier for him. But the unspoken moments pour out of me still. I miss my brother and his normal heart.

 

THE QUILT

 

There is no panel in the great AIDS quilt with your name on it.

Your life did not fit neatly into a 3-by-6 foot shape.

When you took your last breath on June 10th, 1994, I did not believe  then and do not believe now that you would have wanted your legacy forever stitched with the 48,000.

It would have been a forced, symbolic gesture incompatible with how you lived your life.

I could not bring myself to weave your story into the fabric of the AIDS pandemic.

Instead, I have pieced  your life together for my own comfort

working backwards from a diagnosis you were unable to name.

The massive memorial to victims of AIDS does not include you because I could not pretend that you saw yourself as one of them.

That would have been my own invention.

A sister seeking an imagined brother to fill her own needs.

Twenty-two years later, I do not regret the decision.

I believe I honored you by embracing the truth of your life.

To have done otherwise would have been to deny your denial.

 I do not  even visit the cemetery where you and our parents are buried.

You are not there.

You are alive to me each time I listen to the opera,

recall your laugh,

remember your grace,

or look at one of your six grandchildren.

That  is your legacy.

The Names Project is a beautiful and significant memorial.

But your name is not a part of it by choice.

Your name,  Bob,  is forever on the tip of my tongue

and in the ache of my heart.

I wrap myself in your memory, warmed by the history of our family

and the complexity of its pattern.

28 YEARS HENCE: 

What you have missed:

Two marriages.

One PhD.

Six grandchildren.

Five high school graduations.

Three college graduations.

Your 80th birthday. 

One supreme court ruling legalizing gay marriage.

One pandemic. 

One insurrection.

I am now ten years older than you were when you died. 

Lenny is 82.

HIV/AIDS TODAY:

According to https://www.hiv.gov/hiv-basics

Approximately 1.2 million people in the US have HIV. About 13% of them don't know it and need testing. Annual infections in the U.S. have been reduced by more than two-thirds since the height of the epidemic. CDC estimates of annual HIV infections in the U.S. show hopeful signs of progress in recent years.  

According to the National HIV/AIDS Strategy(2022-2025) 

https://www.hiv.gov/federal-res

VISION AND GOALS:

 The United States will be a place where new HIV infections are prevented, every person knows their status and every person with HIV has high-quality care and treatment, lives free from stigma and discrimination, and can achieve their full potential for health and well-being across the life span. This includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance. 

The Strategy sets bold targets for ending the HIV epidemic in the United States by 2030, including 75% reduction in new HIV infections by 2025 and a 90% reductions by 2030.