‘I Took a Look at My Soul the Other Day’

This isn’t supposed to happen.

As a reporter, I’m not supposed to get involved with the people I interview. But six months ago, after I wrote about Raphael Cordero and his work with the elderly, I knew I couldn’t let him go.

I hungered for what he received from his older friends: wisdom, courage, spirituality--that, and a “magic” his presence seemed to create.

I knew I would be coming back to his Burbank home to talk, to listen, to laugh.

I first spoke with Raphael by phone Jan. 9. He cried because he was terrified about going public about the AIDS that had invaded his body.

But he was on a mission. He needed to raise money for the annual luncheon he started seven years ago to honor centenarians. He had only $11.70 in the bank and the event was four months away.

For almost eight years, Raphael helped the elderly. He took them on joy rides and picnics and helped them fulfill their special wishes--a helicopter ride or a trip to see the Dodgers.

But then, he got too sick.

DAY 1, Jan. 22: ‘You’ve Got the Magic’

I’m sitting at Raphael’s bedside. He has asked me to read him the story I wrote about him. He is too weak to read it himself. A persistent cough, vomiting and sharp chest pains, compounded by night sweats, repeatedly interrupt our visit.

But we get through the article. Afterward, he grins.

“We’re going to do so much together,” he says. “You may not know it yet, but you’ve got the magic, too.”

Indeed, the next 152 days would be magical.

DAY 11, Feb. 1: Stories From Our Lives

Raphael and I have become fast friends. We’ve mostly shared stories about our families and secrets about our lives. At 40, he is two years older than I. He has an older sister, Frances. I have three sisters. We are both close to our mothers.

Carmen Marsach, 62, left her home in Puerto Rico last Thanksgiving to care for her son. She first came for a brief visit in 1990, when Raphael learned that he had AIDS.

Raphael never knew his father, who abandoned the family before his son was born. Raphael remembers his father would come around, demanding to see him. But Carmen would hide the toddler in a closet and not allow the man, who had abused her during their failed marriage, to enter their apartment.

“My mother has been my rock,” Raphael says. “If I was well enough, I’d take her dancing. She used to love to dance.”

Tonight, Raphael and I have been returning calls to Times readers who want to contribute to the luncheon. Movie proposals, get-well cards and letters have been pouring in. I read him a few letters until he drifts to sleep.

DAY 32, Feb. 22: Visiting With Rose

“Today’s the day,” says Raphael, as we set out to meet some of his friends. Along for the ride are Carmen and Lisa Lindstrom. Lisa is interested in developing a movie about Raphael’s life. Secretly, Raphael and I have nicknamed her “the tomato lady” because she co-produced the film “Fried Green Tomatoes.”

We visit two retirement homes where we meet Grace Lyon, 102, and Rose Mitchell, 105. We listen to Raphael play the piano for a group of disabled and mentally retarded senior citizens.

Later, we visit with Rose. Exhausted from the outing, Raphael rests in her bed while she sits in her wheelchair. He starts coughing. He can’t stop. He spits into a wastepaper basket. His face is flushed, his body sucked of all energy.

Rose can’t hold back the tears. She knows her friend is very sick.

“I don’t want you to tire yourself out,” Rose says, her hand locked inside his.

“There, baby, you know I love you so much,” Raphael says.

“I know,” Rose answers. “I love you, too.”

“You know people are so amazed at this work that I do with 100-year-olds,” he says. “But I don’t find that so amazing. . . . The only thing that I am really doing is following one of the Ten Commandments: ‘Honor thy father and thy mother.’ If you honor them then you are also honoring God.”

Later, we stop at the cemetery to visit the graves of Paula Luera, 114, and Lottie Hicks, who was 105 when she died last month.

Raphael tells us he has been totally honest with his centenarian friends about the AIDS, and their friendships have become “so fine.”

He says he never wanted his American Centenarian Committee, which he co-founded in 1986, to be tainted because he had AIDS.

Or because he had a lover for 11 years. Marcelo van Dam supported Raphael’s work with the elderly and often contributed money and time. Marcelo was 46 when he died of AIDS last October.

DAY 56, March 17: Polka-Dotted Pajamas

Raphael went into the hospital today.

He doesn’t want to catch pneumonia again. He’s had it twice--the first time, two years ago, when he lapsed into a coma for several days.

This time, tests show no pneumonia. But there are other concerns: Liver and spleen problems. Thrush--milky white lesions that burn his esophagus--could spread to his stomach. He has aches and pains, especially in his bones.

Raphael is getting shots every four hours to alleviate the agony. He’s being fed intravenously and is barely at 100 pounds.

“No matter what happens,” Raphael says, “I’m not going to lose my sense of humor.”

He is too tired and too sedated to continue talking. We sit in silence as he drifts to sleep wearing whimsical polka-dotted pajamas, a lei and Mardi Gras beads around his neck.

“If I have to be in the hospital,” he says, his voice barely audible, “I might as well have some fun.”

DAY 57, March 18: ‘They Think the End Is Near’

“My doctor asked me two questions today,” Raphael says. “She wanted to know if I was prepared to let go. I told her yes. Then she asked if I wanted to be put on life-support systems or if I wanted to go home and die. I told her I wanted to go home and die.”

“Why would she ask that?” I wonder.

“They think the end is near.”

“Do you?”

“Sometimes I feel like I’m dying and sometimes I fight that feeling.”

“You have to fight.”

“I know. I’m trying. I just want to make it to the luncheon,” he says about the May 20 event he describes as the Academy Awards for the Aged. “After that, I don’t know.”

DAY 58, March 19: A Poem at 3 A.M.

Raphael’s condition hasn’t improved. His face is red with patches of blotchy skin. He is unable to eat a full meal. Three bites are all he can swallow. He is repeating conversations. He is angry. He is getting Demerol shots in his legs, instead of his arms, because his arms are sore and finding strong veins has become difficult.

Despite his failing health, Raphael has found something good to share. He wrote a poem at 3 a.m. after being awakened by a dream about his centenarian friends. He reads it to Lisa and me.

THE OTHER DAY

I took a look at my soul the other day. There was laughter and joy and a lot of pain.

I went way back to the beginning of my life. Some of the things I’ve done, not so nice.

To think of all the goodness that has come my way. I wish to stay here forever and a day.

There has never been a time to have a boy or a girl. So I adopted my loved ones from this world.

They included hundred-year-olds and babies and cats and dogs. I’m so privileged to have loved them all.

I’ve grown up a million times. To be like God in heart and mind.

The time has come to write my will. To prepare myself to be forever still.

Although I never knew of the things to come, I’m ready now to go home.

What else is there to say? I just took a look the other day.

DAY 59, March 20: Childhood Memories

It’s almost midnight.

The rain outside hasn’t let up. Raphael asks that I visit awhile longer. I listen as he speaks lovingly about his mother.

“She’s learning who her son really is. She keeps saying ‘I never knew these things about you,’ ” Raphael says, referring to his stories and adventures.

“I’ve seen her change from mother to a care-giver to a friend. This is so very hard on her.”

The dreary weather triggers a childhood memory. Raphael was 10 years old, standing at a bus stop in New York City.

“It was real gloomy that day. I was feeling real blue. There was this old man. He said to me, ‘You don’t look too happy today. What’s going on?’ I said, ‘Today is Father’s Day and I’ve never met my father.’ The old man said, ‘Look, young man, once you get to know your heavenly Father who can give you so much more than what your earthly father could have ever given you, you will know the truth.’ The bus came and I got on and waved goodby to him.”

“That old man saved my life that day. Old people have saved my life many times over.”

He doesn’t know how he survived a childhood in the inner city where “I could have become a drug addict, even a murderer,” he says. He gives credit to his mother who worked two jobs and always left her children in the care of old people.

“Do you know what Raphael means?” he asks. “It means God hath healed. I’m trying to piece it all together--this life of mine. At times I think, ‘OK, it’s time to close up, and then other times I can’t let go. Letting go would make me feel like I’m abandoning my centenarian friends.”

DAY 62, March 23: ‘Going Around in Circles’

Raphael is distraught and angry. Doctors tell him he has a dysfunctional liver and spleen. A brain fungus hammers the back of his head. His hair is falling out.

For years, Raphael had been a computer consultant. When he started working full time to help the elderly almost eight years ago, Marcelo began supporting him. Now, the $640 he receives in Social Security benefits is not enough to make ends meet at home. “My mother is going around in circles, worried about the bills.”

And he is worried because work has not begun on the luncheon, two months away. He also has not found a home for the museum he wants to start to house the collection of photos, clippings and documents he’s collected about centenarians in America.

“It’s rough, so rough. This is the hardest I’ve ever had it. I’m a person of faith but I feel my time is running out fast. I don’t need to be planning a luncheon right now. I just want to go home.”

DAY 63, March 24: White Rice and Black Beans

Raphael calls me at work. He is happy to be leaving the hospital.

“Are you going home to die or going home to fight?” I ask.

“I’m going home to stay alive.”

He is asleep when I walk into his bedroom. His mother is in the kitchen brewing tea and speaking with Mark Compton, Raphael’s best friend for the last six years. Mark will oversee this year’s centenarians’ luncheon.

Each night for the last two months, Mark, Lisa and I have gathered around Raphael’s bed, talking, making him comfortable, or just sitting in silence. We never leave the house without eating Carmen’s white rice and black beans, and without her telling us, “Sleep with the angels,” as we go home.

This night, Mark has brought some old photos. One of them--of Raphael in a security guard’s uniform--catches his mother’s eye. His hair is curly, his frame muscular.

“Look at him, oh, how handsome he is. He doesn’t look the same,” Carmen says, turning away. She leans into the stove and begins to sob uncontrollably. Mark and I comfort her.

She believes Raphael will not make it to the luncheon. In November, doctors told Carmen her son had no more than six months to live. Raphael is into the fourth month of that prognosis.

“He is so sick now and has lost so much weight. He can barely walk sometimes,” she says. “I pray so hard to God all the time to make him better, but he is not better. God has given him to me and soon God will take him away.”

DAY 65, March 26: ‘I Miss You, Marcelo’

I’ve come by to drive Carmen to Vons. Raphael is in bed. “I was thinking about Marcelo this morning,” he says. “I was thinking about how I held him in my arms when he took that last breath and how warm his body felt. How warm death felt at the very instant he let go.”

His wish is to die as Marcelo did: “Marcelo went out like a king. He had flowers and music and friends around him. He was surrounded by love.”

Raphael stares out the bedroom window above the portable keyboard he hadn’t played for weeks. He talks about how being sick has kept him from grieving for Marcelo.

He rushes us off, saying he’ll be fine alone.

When we return, Carmen and I are overjoyed to hear the keyboard booming. But as we walk in, something is terribly wrong. The music is sad. And so is Raphael.

He is sobbing. He has removed his T-shirt and is using it to wipe tears from his face. Shirtless and wearing loose sweat pants, he sits at the keyboard playing, weeping and talking to himself above the music.

“I miss you, Marcelo,” he cries out. “I create ways of missing you. You were such a good friend to me. Now I know the pain (you felt). I know the suffering. Thank you, Marcelo, for helping me with my centenarian friends. Thank you, Marcelo, for so much joy you brought into my planet.”

Over and over again, he repeats these words. His mother tries to calm him. She begs him not to cry, not to be sad. She shakes her head and fights back her own tears. Raphael asks her to allow him to grieve. She leaves the room feeling helpless and frustrated.

Tears accumulate under his chin and are dropping, one by one, onto the keyboard.

This is the first time Raphael has dealt with Marcelo’s death so openly--and maybe, in some way, he senses his own mortality.

Then, he changes the mood. He stops crying. He smiles, and the music is light and happy.

When he stops I tell him that I have recorded his composition and he should name it.

“You name it,” he says.

“Metamorphose.”

I help him back into bed and listen to him explain how a huge burden has been lifted.

Then he pulls back the covers and stares at his thin body.

“My body is mimicking Marcelo’s. I know what is yet to come.”

DAY 83, April 13: ‘I Want to Go Home’

“What do you want to do, Raphael?” asks Dr. Bhavani Rao, his physician.

We are in an examining room. Rao and Carmen stand at his side.

Since his release from the hospital almost three weeks ago, Raphael’s condition has worsened.

“This is the worst I’ve seen you,” she says. “And I must be very honest with you. You are deteriorating. I can’t tell you if you have days or weeks left, but we must decide what to do next.”

“I want to go home,” Raphael says. “I want to let go at home.”

Rao, Raphael and his mother agree to a home hospice program.

On the drive back to Burbank, Raphael convinces his mother to let me take him on a joy ride.

I promise Carmen that we will return before he finishes his cigarette.

He directs me to a hilltop road. He barely has enough strength to stand, but he walks to a spot near the edge of a hill that overlooks the expanse of the San Fernando Valley.

“There’s a spot over here where you can see more of the valley. It’s just beautiful,” he says, and begins to head toward a sloping gully.

“Raphael, let’s go back,” I tell him. “We shouldn’t be here, at all. You’re too sick.”

“I just have to see it one more time,” he says, about to collapse. He leans his body into my chest. His legs tremble, his whole body quivers. But for a moment, we both gaze at the valley view.

“I haven’t been out of the house in weeks. I don’t want to go back to bed. Not right now. Let me have my little escape.”

DAY 98, April 28: As Cold as Ice

The home hospice program started a few days ago. Raphael is sleeping more often than he would like. He blames the painkillers.

He used to not like to take medication, even AZT, because he wanted to remain alert. But the pain that dominates his body has become so unbearable he screams in agony and takes painkillers every three to four hours.

The fevers aren’t quite as common now as they were a few weeks ago. He seems to be either hot or cold, never in-between. The other day, his body was as cold as ice and his feet began to swell and look purplish. He feared death was near. Many of his centenarian friends had those symptoms hours before they died, he says.

Throughout the night we were constantly pulling the sheets off his feet, checking the color. I even compared my feet to his to reassure him that his were not puffy.

He desperately wants to eat solid food, but doesn’t because of the violent vomiting that follows. Carmen has begun to feed him two to three teaspoons of soft food like cheese or oatmeal.

Lisa, Mark and I exercise his legs, help him sit up so he can eat or swallow painkillers with a special malt mixture his mother makes for him. He loves to have his spine and feet massaged.

“It takes my mind off the pain.”

“Look at me, I’m so thin. I’m skin on bones, no meat.”

DAY 99, April 29: The World on Fire

Raphael is the first person I call after the verdicts are handed down in the Rodney King beating case. Like most everyone else, he can’t believe it. But he is too sick to think about it.

“You coming tonight?” he asks.

“As soon as I get off work.”

When I arrive, Carmen is glued to a Spanish-language news program in the living room. Later, Lisa arrives and watches, too.

“I can’t watch that stuff,” Raphael says from his bed. “I can’t deal with it. Not right now.”

I help him out of bed and slowly walk him to his computer. He writes a letter thanking Times readers who have donated more than $5,000 for his luncheon.

Afterward, Raphael returns to bed. He tells me about a recurring dream. He is in a room filled with people wearing white caps and gowns. The people, he says, are waiting to go to the “other side, to begin their journey.” Except he is only wearing the gown.

“I need the cap before I can leave this world,” he says.

He falls asleep and I sit at his side while the fires rage on television.

DAY 101, May 1: ‘I’m Sorry, Mama’

Carmen and I are sitting in the living room, surrounded by Raphael’s collection of photographs, proclamations and letters from President Bush and former presidents Reagan, Carter, Ford and Nixon, acknowledging his work as an advocate for the aged.

“Raphael told me today, ‘Remember, Mama, when I was a kid I would always tell you not to worry about anything because I would grow up to take care of you?’ ” Carmen says. “ ‘Now you are taking care of me and that’s not how I planned it. I’m sorry, Mama.’ ”

DAY 110, May 10: Some Toys for Carmen

Raphael has planned and rested for this day--Mother’s Day--which begins with a mid-afternoon dinner of Carmen’s cooking. Friends have brought her gifts and flowers.

But the best gift of all comes from Raphael: A box full of wind-up toys he had asked Lisa to get for him--including a bird with a long pecking nose, a crazy caterpillar that spins and a hopping eye.

“Mama, I love you so much. I won’t be around to take care of you like I had planned, but here’s something for the toy store you want to open when you return to Puerto Rico,” he says before Carmen opens the gifts.

“This is for your future without me.”

DAY 120, May 20: ‘Besame Mucho’

Raphael proves everyone wrong.

He makes it to the luncheon.

From his wheelchair, he greets centenarians in theirs. He shakes their hands, he kisses their faces, he laughs so hard he begins coughing that cough that hurts every bone in his body.

Before he goes home, Raphael has a wish fulfilled: He dances with his mother.

He smiles as he wraps his arms around her and the two sway to the Spanish love song, “Besame Mucho” (“Many Kisses”).

He is helped out of the chaise lounge we brought for his comfort, and escorted to the podium to address almost 75 guests, including eight centenarians.

“This luncheon has brought me life,” he tells the audience. “I keep saying to myself, ‘I’m in a sea of love’ because that is really where I am. We never wanted to be leaders in this area of work with centenarians. The only thing we wanted to do was set an example. And today, for me, I don’t know how much time there is, but I can tell you if I had a millionth of what you have given me, and if I could patent it and put it in my pocket and use it everyday, I would.”

DAY 123, May 23: A Box of Camphor Wood

“I feel like a bucket of ice water has just been poured all over my body,” says Carmen. She is standing in a Chinatown curio shop, where she has just completed her afternoon mission: finding a special wooden box for Raphael’s ashes.

The box is made of camphor wood and predates World War II. She will carry it back to Puerto Rico.

She holds the box a moment. She studies its exquisite carvings: a bridge over a sparkling river with an embankment of trees, vines and blossoms. She opens it and smells the wood; it is fresh and natural. Raphael would like that. She runs her fingertips across it and then hugs the box to her chest, trying to fight back the tears.

“Raffi,” she whispers. “My son.”

DAY 124, May 24: ‘I’ve Come Full Circle’

“Please don’t turn off the light,” Raphael asks as I reach for the lamp switch by his bed.

He has asked me to spend the night, but Raphael is fighting sleep.

“I’m scared,” he says. “I’m scared of not waking up. Let’s leave the light on.”

We try to find a monster movie on television, but to no avail. The night sweats soon begin.

Together we change his T-shirt eight times; each time the shirt has been soaked to his body. He wants to take a bath but he doesn’t want to wake his mother, who is asleep in the other room. So sponge baths suffice until morning.

“I’m hot and I’m cold. I cough and I can’t keep food down,” he says. “My body is constantly changing, turning. When I see myself in the mirror I look different. I’ve become like my centenarian friends.”

His once-curly head of hair has thinned. He can’t get out of bed by himself. He reminds people not to step on his feet, not to shake his hand or hug him too tightly because it pains his frail bones. His eyesight is failing. When he stands, his legs wobble until he can maintain a balance. And when he walks, it is in small steps and always with someone he can hold onto.

“I always used to say that my centenarian kids were piecing together the mysteries of life from their beds and wheelchairs. It’s like I’ve come full circle, because now I’m doing the same thing.”

DAY 140, June 9: Amazing Grace

Raphael is serenaded today. Lisa arranges to have gospel singers sing to him. He wants us to light the candles on a makeshift altar in his room to mark the occasion.

We form a circle and pray. Then, Dorothy and Irene sing “Amazing Grace,” one of his favorites. Hearing it--eyes closed and palms pressed together as if in prayer--moves Raphael tremendously.

We pray again and then Raphael wants to show his guests how AIDS has left its horrible mark on his body.

“I don’t know if you have ever seen anything like this,” he says in a faint voice and then asks for my help in removing his T-shirt. “But it may help you to be a better witness to the Father.”

I work the bathrobe off his arms and let it fall to his waist where it covers his underwear. Then the T-shirt is removed, revealing his emaciated body, skin wrapped around bone.

“This is what Satan says I have, right here--this little bony, little critter,” he says referring to his body and the effects of AIDS on it.

“But I don’t believe it. . . . I’ve had dramatic things happen to me, really wonderful, spiritual things because of this experience with AIDS.

“The Lord may permit these things to happen so that you can be used, still, as his instrument. And I’m going all out in proving His thing, not the devil’s thing.”

DAY 146, June 15:

A turn for the worse: Raphael doesn’t recognize his mother.

“I was leaning over his bed this morning when Raphael put his hand on my shirt and said, ‘Hi lady, who are you? What are you doing here?’ ” Carmen says.

“I told him, ‘Raffi, I’m your mother. It’s your mother here.’ And then he recognized me. I know it’s the brain fungus,” she says. “What can I do? I just pray to God to do what is right.”

DAY 147, June 16:

The hospice doctor examines Raphael today. He tells Carmen that Raphael has less than two weeks to live. Carmen says she is prepared. She thinks it will be sooner.

I drop by during the afternoon. Our visit is brief. He is too tired and it is time for his morphine, which puts him to sleep almost instantly.

DAY 149, June 18:

After we light the candles, Lisa, Mark and I sit around Raphael’s bed. All day and now, all night, he has not talked or eaten. He didn’t turn the TV on and there is no music.

He just moves his lips and eyebrows. Although he’s heavily drugged and too weak to talk, we know he can hear. “That’s the last to go,” the doctor and nurses have told us.

Separately we talk to him, telling him about our work days, about how beautiful the candles look, how handsome he looks.

But there is no response.

He is very, very sick.

We sit in silence.

DAY 152, June 21: ‘Please Send Your Angels’

It is Sunday, late afternoon. Lisa, Paul Skermetta, a friend, and I are standing outside Raphael’s home, listening to the hospice nurse.

She explains the end is very near. Maybe within two days.

She says blood is not circulating throughout Raphael’s body, which is why his heart is pumping twice its normal rate. Simply put, she says, “His body is shutting down.”

He can barely see through his left eye and to what extent he can see through the other, no one knows. Many of his organs have been damaged. The fungus that has spread through his brain has made him forget what he’s saying, and at times, to whom he’s speaking.

His mother has seen him go from a healthy 126 pounds to less than 90. He no longer has the strength to walk to the bathroom, much less use a plastic urinal. He now must use a catheter. And all around him are pillows--big and small, foam and feathered--stuffed between his legs so bone won’t press against bone as he sleeps on his side.

It is time to light the candles.

Carmen offers a blessing this night.

She stands before the friendship altar, her hands pressed together and gazes at the sky through the window. As she offers the blessing, Lisa and I light the candles.

“Please God, hear my prayer,” Carmen pleads. “Send your angels to Raphael. Send your angels to Earth, to this house, to this room. My son has suffered so much pain. I don’t know what you will do, but if your will is to take him, please send your angels.”

DAY 153, June 22: His Final Wish

At 7:45 a.m., God sends his angels.

Lisa, who has spent the night and was with Raphael when he died, says the evening and wee hours were rough for him. He often cried out for his mother.

For more than seven hours before his death, Carmen read from her Spanish-language Bible, mostly from Psalms. She prayed for her son’s pain to go away. And when she wasn’t reading passages or praying she caressed his face, kissed him, spoke to him. She told him how much she, his sister and friends loved him.

The last 30 minutes of his life were the hardest, Carmen told me. “His breathing was fast, very fast and hard. His heart was pounding fast. I could feel it pounding fast. I could hear it. I told him I loved him and he moved his lips, but he couldn’t speak. I know he could hear us till the very end. ‘Mama,’ ‘Mommy,’ ‘Mama’ he would say. I told him I was there with him.”

“Then I left for a few seconds, not even a minute. I was walking to the bathroom when he took his last breath,” she says.

Lisa believes Raphael chose to die that way to spare his mother the agony of witnessing his last breath.

After Lisa calls me, I race from my home in Silver Lake to Raphael’s bedside. I hold his hand. I don’t want to let go.

Throughout the day we keep the friendship altar lighted, we burn incense and play his favorite music, including his own “Metamorphose.”

We sprinkle red rose petals around his head, and more petals and flowers on a baby blue sheet that covers all of him except his face. Individually--and later, in groups--we spend time with him. His gray cat, Zane, and his mother’s dog, Macho, never leave the room.

Fifteen minutes before Raphael is taken to a crematorium, we gather around him, holding hands. I hold the Bible in one hand and place the other over his heart while I read Psalm 23 aloud. His sister, Frances, who arrived from Denver that afternoon, hugs her mother and then Raphael. She struggles to say goodby.

We all do.

We cry. We celebrate.

Raphael lies there with his brown eyes open and a grin on his face.

Candles flicker. Incense wafts. The bed is fragrant with roses. Music and love envelop Raphael’s circle of family and friends.

As was his wish, he died like a king.

Raphael Cordero died on June 22 at age 40 after a two-year battle with AIDS. More than 100 people attended a memorial service Monday.