Thank You, Mr. Sondheim

I have been slowly making my way through FINISHING THE HAT, Stephen Sondheim's instructional memoir about musical theatre. I say slowly, because each chapter is an in depth analysis of a different musical, complete with lyrics, anectdotal stories , biographical information, commentary, confession, and cautionary tales. I'm reading this book one chapter at a time.

Now this is less a review of the book (I'm only half way through - having just finished DO I HEAR A WALTZ? ready to jump into COMPANY) as it is a reflection on what I've learned thus far. I figure, as an aspiring writer, former musical theatre performer, lover of musicals, and all out musical theatre fanatic who has thus far failed to successfully create one of her own, I might as well learn from the best, right? Each chapter of FINISHING THE HAT feels like a master class taught by Mr. Sondheim.

There is much to be learned about rhyme scheme. He has strong feelings about what he calls the "sin" of the misplaced stress in lyrics. But, the one line in the book that hit me between the eyes, made me close the gigantic blue cover, sit back, desire to argue, and then force me to face my own conceit, was that writers "should not direct their own work."

He uses his experience with ANYONE CAN WHISTLE, the show that he and Arthur Laurents created, and Laurents directed as the basis for his warning. While arguably the first "absurdist" musical, it was by all rights, a commercial failure with some great songs.

Sondheim says that a writer, "creates." A director, "interprets."

"Yes," I thought. "That is exactly right. I am more of an interpreter than a creator." Now grant it, my directorial experience has primarily been in the field of educational theatre, thus it comes with the many layers of "teaching" along with interpreting. In fact, getting to the interpretation is itself an educational process. Through my directing, I teach how to analyze. Because it is my job to encourage young artists, my work with them is often their first collaboration.

There is so much for them to learn. I have never been a director who spoon feeds. At the point I'm forced to spoon feed, I have become desperate. It has happened only a couple of times in my career as a theatre educator.

No, my way is the way of digging, questioning, working with the actor to come to some understanding of the playwright's intent. It is my job as the director to make that clear - moment to moment -through physical and inner action, stage picture, pause, and delivery. As a theatre educator, each one of these aspects of an actor's performance includes teaching - the degree to which depends obviously on the innate, intuitive ability of the student. Sometimes the job requires a lot of "undoing" particularly with the "highly experienced" student whose background includes a lifetime of children's theatre.

More often than not, students come with no training, only performing experience. Moving them from "performer" to one who appreciates the "craft," is a process that requires immense patience and an understanding that the awakening of the artist may not occur until long after the rehearsal and performance experience is completed.

The young, new, actor is blindly trusting me to mid-wife their own artistry without realizing that that is what is happening. Through a uniquely individualized, nuanced process, the student, grows to understand that in acting, he is the instrument. A musician learning to play the violin must know how to read music, commit to a discipline of practice, and develop the technique of bowing. These skills ultimately move the player into the world of interpretation and artistry.

It is the same thing for an actor, only in his case, the instrument is himself.

Interpretation of a musical includes understanding the plot, characters, and story - "the book", the lyrics of songs, and the orchestration of the score. The role of music in a musical may seem the obvious distinguishing feature of the genre - but as a director, I spend as much time listening to what story the music is telling me through its style, melody, tempo, rhythm, crescendo, decrescendo, and structure as I do analyzing lyrics. The music often conveys a character's motivation, decisiveness, uncertainty, and feeling. How the lyrics fit with the music and how they interweave with the book are also part of the interpretation.

In FINISHING THE HAT, I have learned that the process of creating what, as a director, I interpret, takes enormous skill. It's not that I didn't know that. Nothing in art comes easy. But it is important to recognize in one's self, where one's expertise lies.
A writer "creates." A director "interprets."

The desire to create may be a driving force. Whatever the motivation to do so, wisdom, and Mr. Sondheim, dictate that there be someone with some aesthetic and emotional distance, to interpret what you have written.

Not Much to Say

The trouble with her is that she lacks the power of conversation but not the power of speech.
George Bernard Shaw

Recently I've found that I have had nothing to say. Have you ever felt that way?

In conversation with others, I've had virtually nothing to contribute. Oh, an idea might flash, an opinion might come to mind - but the energy required to formulate the opinion into something more than half baked has been more effort than I've wanted to invest. Thus, the thought hasn't made it passed my lips. In a word, I've been lazy.

I've felt shallow. Boring. Uninteresting. Dull. Blank. My responses have amounted to a lot of "hmm's and huh's." Unfinished sentences left dangling. Questions left unexplored. Mental shrugs of "I dunno...."

For example, last night the question of why people research their ancestry arose. Why do people need to look into their past? I listened to the conversation feeling overwhelmed by the question. The answer seemed quite obvious to me. Our need to understand who we are - to come to know ourselves - is one of the driving forces of human nature. Identity and self may be defined in any number of ways - but coming to know our story - the narrative of our lives- the evolution of our family history within a greater context of time, place, culture, society, and circumstance gives us insight and perspective. The "then" is contrasted with the "now." By looking into the family history and genealogy, pieces of ourselves become clearer - our personality, our level of determination, our addictions, the patterns - Isn't this why adopted children go in search of their birth parents?

The diagram of a family tree, each branch bearing names and dates of distant relatives - strangers really, also contains their untold stories. The stories of survival and loss. The stories of joy and heartbreak. The stories of courage and cowardice. Their dreams, their hopes for a better future, their failures. Boom and bust. Black sheep and golden. Robust and sickly. The unlikely and predictable. The stories that shape the trajectory of a family against the back drop of chance, luck, fortune, opportunity, and instinct.

The desire to know begins, I think, with curiosity. It is sustained by a love of story. It is fueled by imagination. It is deepened by a need to understand.

I guess it is no surprise that I am to the core, a dramatist.

But last night, I didn't say any of that.

Sometimes, conversation is just too much energy. Thoughts emerge. The thread of one thought connects to the thread of someone else's. A debate may ensue requiring defending one's position, the parsing of words, the recitation of statistics, the retrieval of a fact buried deep in the recesses of one's mind - the frustrating feeling of "I used to know that."

There's a lot to talk about these days. The economy. The achievement gap in education. The budget. Nutrition. Technology. The state of healthcare. There's a lot to feel bad about. How one parented. The choices one made. The passage of time. Getting old. Whether to get a colonoscopy or not. People getting sick. Terrorism.

I just don't want to talk about it.

In 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.”

Aria- A Sister's Journey With AIDS

I've never been good at reading graphs. But this one was personal. There, on the page of the Los Angeles Times, was a graph beneath the headline AIDS at 30. My eyes scanned left to right and landed 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 read 1995: Introduction of highly active antiretroviral therapy. Missed it by that much.

To read my memoir
Aria- A Sister's Journey With AIDS
from the beginning, please go to June 5, 2011

A Message to 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 Poems

9/27/1994
Sister

Sister
A word I will never hear again
Sister
A name
My name
My loss
Sister died with brother.
Brother lives in sister.
Only brother.
Only sister.
Only surviving child.

10/11/1994
I Feel My Brother

I catch little glimpses of my brother in Rob's hands.
How his fingers taper or move.
How his breath is caught or sighed.
How he chuckles.
I see my brother in Rob's hands.
I hear him in his laughter.
I feel my brother in my face.
Across my brow.
On my lips.
Behind my eyes.
Heavy on my lids.
I feel him in my frown.

I feel my brother in my walk.
I find my brother in places I never looked before.
In my work.
In the thrill of a new idea.

I do not need to search for him.
I feel him everywhere.


12/17/ 1994
The Bill

I meet my brother again
He is on the page in front of me.
CT HEAD $162.75
CHEST TWO VIEWS $35.50
UPPER GI $112.25
CHEST CT $226.75
CT ABDOMEN $267.00

His body now with prices attached.
Tests to find answers to the unasked question.
Denial sits on my dining room table.
The tab $804.25

I stare at his body on the page. Chest and abdomen the priciest.
Each line of the bill reminding me of those days in the waiting rooms.

Luskey, Robert L
DOB 1/31/41
Sex M
Acct # 104855

Balances due.
I write
"Deceased. No assets."

2/15/1995
Un Bel Di
One Fine Day

This town is for lease.
The emptiness is vast here.
It echoes in corner storefronts.
Masked in vacation beauty, brilliant sky and rocky coast
it mocks me.
I recognize what lies behind the vacant shops;
There is a heavy sadness in the cool sea breeze;
I feel the dullness of an overcast heart as I walk the brightly colored streets.
"Where are the shuffling men," I wonder as I pass the Jolly Rodger restaurant.
The limp arms, jutting heads, ashen faces well hidden from publich view;
Living in the underbelly of Laguna Beach were the sun doesn't shine.
Through the windows, I see a festival of death invisible to the naked eye,
I see my reflection in the glass;
I hear waves beat the rhythm of lost art.
I miss my brother.

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.

The Mortician

By 8:00 a.m. I was back home. The guy from Hilgenfeld Mortuary arrived at the hospice around 7:30 a.m. or so to pick up the body.
Rob stood at attention, a private salute to his lost father.
And he gently reached down and swept a lock of hair from Bob's forehead as the body bag was zipped over his face.
Rob, Matt, and I emptied the hospice room. We handed stuff over the patio wall instead of carrying it through the hallways. Rob drove my van around to the back of the building.
We loaded the framed picture collage with Bob healthy and the rest of us laughing at parties at Christmas at birthdays at Easter at the pool;
the patio chairs I'd brought;
my suitcase with my clothes in it;
my toothbrush;
the vase with the sunflower in it;
the family portrait;

We left the diapers.
We left the sween cream.
We left the wipes.
We left his comb.

Later that day, Rob, Matt, and I met at Hilgenfeld Mortuary to make the "arrangements."
We got the giggles.
The mortician was taken aback by our behavior. He even scolded us.
"I'm not accustomed to people laughing at a time like this."

We didn't care. The sales pitch for the "merchandise" set us off.
Sleep deprivation, release of tension, gallows humor - it felt good to laugh.

We all knew had Bob been there with us, he'd have been laughing too.

Last Breaths

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.

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.

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.”
(Aria - A Sister's Journey With AIDS continued in next post - The Vigil)

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.
(Aria - A Sister's Journey With AIDS continued in next post - The Hospice)

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.


(Aria - A Sister's Journey With AIDS continued in next post- The Last Day At Home)

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

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.
(Aria - A Sister's Journey With AIDS continues in next post Lamantation of the Days)

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.”
(Aria -A Sister's Journey With AIDS continued in next post Hospital Bed of Honesty)

My Big Brother

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.


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.




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.

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.

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


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.



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.




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


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.


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.




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.


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.



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.


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.



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.


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.


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.

(Aria-A Sister's Journey With AIDS continued in next post- Brotherly Love)

The Den

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Power of Attorney

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

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

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

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

The social worker didn't say a word.

It was done.

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

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

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

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

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

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

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

And the doctor nodded.

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

I took notes.

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

The Hospital

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

Humbling. Transforming.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday April 28 - Matt
Dad is awake but groggy.

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

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

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

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

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

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