Sunday, June 19, 2011

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)

Tuesday, June 7, 2011

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.”
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)

Monday, June 6, 2011

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.
Brain Tumor?
Always avoiding the real question.
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)

Sunday, June 5, 2011

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.


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
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,
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.

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.
Thick with uncertainty
Eyelids heavy
Moist palms slip into each others’
Staring into the void
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
Nothing quick.
Pressing Humidity
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)