The Touch of Hope
Lynnette Luis fans her hands slowly across Juliette’s narrow back, her touch as soothing and tender as her thoughts.
“Let no harm come,” she says silently to herself. It’s as if she were rocking a baby, swaying gently to the memory of a faded lullaby. Gently, gently.
She wants Juliette to know that she is safe, that time won’t stop, but for now it will pass silently and without intrusion. She speaks through touch, whispering for Juliette to release what is held back, rest what is weary.
The weight of Juliette’s life is substantial for a 14-year-old. There is the weight of school and future, the weight of self and peers. The weight of HIV.
Juliette and her mother, Amber (not their real names), tested positive in 1986, when Amber’s husband, Juliette’s father, was diagnosed with AIDS and died at age 32. It is a secret they share only with a small circle of loved ones. Sometimes, Juliette says, it feels as if she is living two lives and carrying the weight of both.
Once a week, Luis, a 28-year-old professional massage therapist, takes time out from her practice to arrive at their home as a volunteer for Venice-based Heart Touch, a nonprofit service that provides free massage therapy for AIDS patients and children who are HIV-positive.
As Luis slowly begins the treatment, Juliette feels her burdens dissolve as if absorbed by air and carried by wind to a place far from childhood and home, far from two hearts that are sometimes heavy.
It is a feeling not unlike the weightlessness of body surfing, being held in the palm of the ocean, suspended between water and sky. It is as much freedom as she knows.
Luis, through her involvement with Heart Touch, also seeks freedom. Since her adoptive mother’s suicide 11 years ago, she has felt constrained by her anger at death, her fear of it.
“I feel like I’m doing something that’s helpful,” she says of her work with Heart Touch. “With my mother, I felt helpless, like I could never do anything that could help. Heart Touch is helping me embrace the fact that death is a natural part of the cycle of life.”
And there has been another equally important but unexpected lesson.
“It has also shown me about living,” she says. “[Juliette] and [Amber] are both so vibrant, so full of life. When I think about everything they have to go through, it makes me grateful for what I have, for what I can give.”
Most Heart Touch clients are nonambulatory, some too ill to even speak. Luis, of North Hollywood, says there will come a time when she is ready for the lessons that death brings, but for now she learns about life, courage and hope.
She listens to Juliette and Amber, and sometimes on her drive home she wants to cry.
“Why a child?” she asks. “Why her mother?” She finds answers in their love and laughter, in the way she has been allowed to touch their lives. Gently, gently.
Search for Understanding Led to Heart Touch
Shawnee Isaac-Smith saw death coming from a distance. When her mother suffered a brain aneurysm in 1976, doctors asked whether they should connect her to a respirator, and Isaac-Smith said no, her mother would not want life on those terms.
Instead, she held her mother, touched her face and sobbed, waiting for death to come. It seemed to draw close with each labored breath, but Isaac-Smith could not let go. Finally, she says, she felt her mother’s spirit take new form, “the way a cloud turns to rain.”
She has since searched for understanding of what happened during that moment, which unexpectedly brought forth the distinct beating of her own heart. What happened to her mother, and what happened to her?
A university student at the time, Isaac-Smith had planned on becoming a dentist, but that was not her dream. Following her mother’s death, she switched to public health, graduating from UCLA in 1978. In the early 1980s she studied Rolfing, a form of body massage, and, in 1986, she founded the Santa Monica Healing Arts Center, a holistic, alternative health care facility.
The center closed in 1993, and Isaac-Smith now works in private practice in Venice. In 1995, her search continued when she started Heart Touch, which has become her passion. The idea came to her through a colleague suffering from AIDS. Perhaps it was fear of AIDS or fear of being close to a dying man. Whatever it was, he told her, it isolated him at a time in life when he needed most to be touched.
“He felt ostracized, abandoned by society,” she says. “People wouldn’t touch him. He wanted so desperately to be touched and nurtured and was being rejected by society, ostracized because he had a disease that made him untouchable. To me, that was very painful to see.”
She massaged him for the final months of his life, and through it learned how death is sacred--as sacred, she says, as birth; and she discovered that connecting with someone as death comes is life-changing and life-giving.
“There’s a lot of healing that happens. It’s not physical healing; it’s emotional healing both on the part of the client, the practitioner and the family,” she says. “Touch is a very powerful tool for creating change, not only in our psyches but on a very deep level.”
Heart Touch now has 126 volunteer massage therapists who have clients throughout Southern California. Isaac-Smith hopes someday to train volunteers in other cities and reach more people who hunger for touch--the elderly, the sick.
“It’s not about massaging,” she says. “It’s about touch, touch in a very deep way. . . . It’s not so much that we’re going to cure people. It’s really about touching someone who feels untouchable, who has been made to feel untouchable.”
Heart Touch is an intersection of many paths. For Lynnette Luis, it’s about coming to terms with a mother who chose death over life, and for her clients, Juliette and Amber, it’s about choosing life over all else.
Her Husband Broke the Bad News to Her
It was supposed to be a time for hope. When her husband called from the hospital, Amber thought it was for treatment of alcoholism. His drinking had prompted their separation, and what she wanted most was for him to be well and their family to be together again.
She took Juliette to the hospital to visit him, to offer encouragement and let him know that his family loved him and supported him, but upon entering his room she sensed that something was horribly wrong.
“He just shook his head, and everyone was very serious, and I didn’t know what was to come next, but then I found out,” she says.
She had every reason to hate him, but couldn’t, not when she tested positive for HIV and not on the morning she dressed Juliette, then 2, and took her to the hospital for blood tests.
“They couldn’t find the right needle for her because she was so little,” Amber says. “They poked her so many times and she was crying. It was awful. Then a nurse came in and said, ‘You’re using too thick of a needle for a baby.’ She was kicking, and we had to hold her down.”
Nothing in life compares, Amber, 44, says. Not the discovery that her husband had AIDS, not the fact that she was HIV-positive. Nothing compares to the agony she felt when Juliette tested positive.
“I told her father, and all we could do is cry,” she says. “He kept saying, ‘I’m sorry, I’m sorry.’ Our reality was a nightmare.”
Amber put off telling Juliette, hoping a cure would be found by the time she was old enough to understand. Years went by, and finally, one night they sat in the living room, and Amber tried to explain. Juliette, then 9, listened quietly then asked, “Am I going to die?”
Amber tried to offer hope. She explained that it was a very serious situation and that, yes, some people die, but doctors would do all they could to help them both.
That night Juliette, then in fifth grade, slept little; and the next day at school, with Martin Luther King Jr. Day approaching, she wrote a paper titled “I Have a Dream.”
“I have a dream to be a doctor to help kids like me. I want to make a medicine that comes from the rain forest that will cure colds, heart problems, cancer, HIV and other problems.
“I have a dream to get married and have kids. I want to be a good mother. I want to help my kids with their education. I want to live in a nice place where there isn’t crime.
“I have a dream to help the world, to save the rain forest, to stop crime and to have peace on Earth forever.”
That dream, in many ways, has sustained her. Her health has been relatively good, although she tires easily, and recently doctors ordered a change in medications. Lab results indicated that the current drugs are losing effectiveness.
“They all have different side effects,” Juliette says, “and it shortens the list of medications that might work for you. That’s the part that’s hard.”
She’s Still Hoping for a Miracle
It’s all so unreal at times, she says. How can this be happening? She has lost friends to AIDS over the years but has never lost hope. Perhaps there will be a cure. Perhaps there will be a miracle.
She maintains a careful balance with her mother, each of them realizing they need to be strong for each other. Juliette says she cannot imagine life without her mom. If she were sick and knew she was going to die, she says, she would want to spend “every itty-bitty microsecond” with her mother, her cats. And she would probably want to eat tomatoes, which she loves.
She would want her ashes scattered somewhere beautiful, like the ocean.
“There’s no life in a cemetery,” she says, “but there’s life all around in the ocean.”
She wonders why this has happened to her, why it would happen to anyone. Perhaps, she says, her purpose in life is to educate, to share wisdom that comes with being HIV-positive. On this, she has much to say:
“Try to do everything possible that you can do,” she says. “All your dreams, try to fulfill them in any way possible. . . . I don’t know what’s ahead of me. I don’t know if I become another person or turn into a cat if there’s reincarnation or if I go straight to heaven or if I go to another planet or if I completely disappear off the face of eternity as we know it, so I can’t really say, but right now I can say life’s way too short.”
Heart Touch, she says, is a chance to take time out, to think or not think, talk or not talk, laugh or cry. When she gets lost between two lives, Heart Touch helps her find her bearings and remember her dreams.
Once, right before a trip to Hawaii, she had a dream about her father, whom she knows primarily through stories and photographs. Then during the trip, she was at the beach one day when clouds came over and thin, golden shafts of light angled through them in sheets and sparkled jewel-like off the ocean surface.
She thought about how her father loved the ocean, perhaps as much as she does. He, too, saw beauty in its waves and dancing light.
Sometimes she and her mom talk about signals they can give each other when one of them passes on--an unexpected puff of wind, or sunlight in rain--so they will know they are still together.
And sometimes when they are at the ocean, it almost seems like Juliette’s father is there with them, and life seems to change. It becomes light and eternal, a cloud turned to rain.
Duane Noriyuki can be reached by e-mail at email@example.com.
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Three-Part Series on AIDS Topics
Southern California Living’s three-part installment on AIDS:
Today: Heart Touch, a service that provides massage therapy for AIDS patients.
July 6: Noches de Feria, an outreach program in Orange County for Spanish-speaking people who have AIDS or HIV.
July 13: Profile of a 15-year-old AIDS activist who has the disease.