Editor's Note: In addition to support groups, the CFRI conference committee scheduled a play to be held during the 1995 CFRI Conference, called "Good Grief Lolita" which focused on one woman's experiences raising a child with CF.
It is Christmas and Lolita is in the hospital. Lolita, a little girl with cystic fibrosis, is talking to her mother, "Here comes another Santa Claus.... Why are there so many Santas? They must be actors, huh? I hate being here. I'm sorry mommy for being so angry. I wanted to be home for Christmas, not in no hospital. There's nobody to play with.... Is that for me? Are those the presents the real Santa brought me?.... Oh my God, a Ken doll and a bed for Barbie.... You see how stupid she looks, her head keeps turning around like the exorcist girl. See? That looks funny, huh? Take me home, Mommy."
And with that, Wilma Bonet describes one touching, rollercoaster moment in the life of her only daughter, Lolita, who died in 1980 at the age of seven, of cystic fibrosis. The scene is from the play, "Good Grief Lolita," first written in 1993 and performed by Bonet, an accomplished San Francisco actress. After appearing at local festivals and theaters in San Francisco, Bonet gave a heartfelt performance at the CFRI/IACFA 1995 Conference. "Good Grief Lolita" is about Lolita's five-year struggle with CF and how her mother dealt with her daughter's life, illness and death. The story begins in March of 1975 with two pivotal events: Wilma's abusive husband leaves her (they ultimately divorce) and Lolita is diagnosed with CF.
Wilma, struggling actress, suddenly also becomes a single parent and the health care provider for Lolita. Bonet recalls dealing with the hard facts of raising a chronically ill child. In one scene she interacts with the doctor who broke the "scientific mumbo-jumbo" news that her daughter had CF. "Excuse me," Bonet demands, "did I hear terminal?...is that like in bus terminal or like in kick the bucket, disease-and-eventually-die terminal?" In another, she looks for humor in a dark moment. While Bonet is using a suction machine to pull mucus from her daughter's lungs, Lolita begins to gag and then throws up. Upon seeing the vomit, Bonet also throws up. She sighs and remarks, "The family that throws up together, stays together." In the play, Bonet doesn't follow a chronological time line, rather the audience can feel the actress moving from memory to memory, much the way the mind works after experiencing the loss of a loved one. She stages a scene at a funeral home where, in keeping with Puerto Rican tradition, she asks the mourners to wear pink (her daughter's favorite color), dance, and celebrate Lolita's life. At this point, she is also recalling the emotional struggles she shared with her daughter. Lolita often refused her medications and efforts to force her usually failed. "Once--I was so tired that day--I'd been working eight hours a day and using public transportation.... She refused to take her medication, she wouldn't let me do the therapy, and we fought. I got so angry at her. I remember telling her that if she didn't take her medicine, she was gonna die. And she said, 'I don't care, Mommy! I would rather die! I hate the medicine! I hate the therapy! I hate it, I hate it, and I hate you!' I smacked her. I hit her legs so hard. I know it was hard because my hand was burning. I had lost it." She lets us know that the incident prompted an emergency meeting with a social worker. As she moves from her sadness into how she dealt with the incident, the audience moves from the painful feelings of the memory to the reality of the constant medical interventions a family with CF requires. It reflects the reality of our daily experiences.
The play concludes with Bonet telling "The Pink Princess," a story she wrote for Lolita two weeks before she died. In it a happy pink princess lives in heaven with her pink friends. One day the pink queen tells her that it is her turn to be sent to the blue world (earth) to live with a mommy and daddy. She was given some pink powder to bring with her to put in the corners of her mouth each day to help her keep a big beautiful pink smile. But one day, all of the pink powder is gone and the princess' smile becomes smaller and smaller until it is completely gone. That is when she must return to the pink world (heaven). She is very happy to be back in the pink clouds among her pink friends, but because she also misses her blue world friends, the pink queen gives her a huge pink mirror that enables her to see them. "There's mom," the princess says, "but she looks sad." The queen instructs her to touch the mirror. As she does, the princess is relieved, "She has a smile...a pink smile."
In an interview, Bonet described the impetus behind the play. "It was time to talk about what happened. What I did was celebrate her life... When I look back at those years, I didn't think anything of it when I was in it. But it is a hard life for a parent and a child. "...it was a healing piece... People need a way to heal. By seeing somebody who has gone through it, they know they are not alone, that they have the same emotions, the same pain, the same fears of making mistakes, of feeling like they have been wronged in this world. "... people are not allowed to grieve openly in this society... Playing a song, or picking up an article of clothing, or a memory...that is all I have and that never goes away. Instead of suppressing it, I bring it out. ..what I remember is not the disease but how she loved life... And she was my friend and my daughter and we had great times together... She makes me laugh still. This is...a celebration piece and that is why I call it good grief," Wilma said.
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