Passing Her Message On

On the first anniversary of my daughter Dee Dee’s death, her husband gave me her journals. I settled into a lounge chair, the same chair from which I watched my daughter die, to read the record of her private thoughts and feelings.

April 16, 1993

How does someone of 24 begin to face the reality of AIDS and continue on? My life changed for me a week ago, and now I have to meet the challenge or just give up. I am so scared, but I know that in time, these feelings can and will turn to the courage I need to fight this illness.

So you listen to me VIRUS! I have lots of things left to do here. I am not ready to accept this death sentence. I want to live. I obviously have something to say and do, so that others someday won’t have to fight you. I want you to hear me very clearly. I will and can stay healthy for as long as I need to. Thank you God for answered prayers. I am very thankful for the loved ones in my life, for their care and support.

`This little light of mine, I’m gonna let it shine and shine and shine!’

I read her account in one sitting. That I found no surprises confirmed that she had shared her life openly with me. I was struck by Dee Dee’s ability to quickly decide that the only sense she could make of what was happening to her was to tell her story. She wanted others to learn from her, so that they would not have to look in retrospect at what they might have done differently. Her decision to become an AIDS educator forced my once-shy daughter to be public about something very private: her sex life.

Writing It Down

One year after she died, compelled to keep her message alive, I became an AIDS educator. This work gave meaning to my seemingly senseless loss. Yet, the work never felt like enough. Two years after she died, I was still struggling to find my new life. I missed Dee Dee and longed to hear her voice and feel her hugs. I reread her journals to hold her close.

As the third anniversary of her death approached, it was sinking in that forevermore a piece of my heart would be missing. My memories of her were fading and that distressed me. Around that time I attended a writer’s seminar. The teacher insisted that we already knew how to write. All we needed was a way to release on paper the story within. Using his road map I started to write Dee Dee’s story in longhand.

After piecing together details from her journals and mine and the many scrapbooks of cards and photographs, holes still remained. I sent a letter to my family and my daughter’s closest friends, fishing for facts and any insights they could provide.

When I shared with a fellow writer and friend that I was writing my daughter’s life story using her journal entries, my friend said that she would never want her journals to be published and that she had it so stated in her will. It gave me pause to think and to query others. The results were mixed. Some people gave me an emphatic “no” that they would not want anyone to publish their journals. Others said “yes” that they would be comfortable with their journals being made public if there was some greater good or insight for others to learn.

What Would She Want?

I anguished over my decision. I thought about Dee Dee. She was so open, loving and giving. She was dedicated to teaching others about HIV. I recalled one of her first newspaper interviews. When the article was printed, Dee Dee was angry because the editor had changed her name to “Sandy.” She called the editor and questioned him. The editor said that he did it to protect her and her family’s privacy. She proceeded to tell him that her family was as public as she was and that he had missed the whole point!

I could not imagine Dee Dee would mind that I published her journals. If anything, I think she would have been proud of me for doing so.

Interestingly, my first inclination was to change the names of the people in Dee Dee’s life story to protect their privacy. When I told Dee Dee’s husband, he insisted that I use his real name. When my husband read my first few chapters, he asked me why I had changed his name. The unanimous feedback from a small group of people who read the first draft was that I needed to use real names to make this story honest and credible. So I asked all the main characters for permission to use their names. All but one gave me a resounding “yes” both verbally and in writing. This was further affirmation that I was on the right path.

Sharing Her Message

Writing brought my daughter closer. I could again hear her voice and feel her presence. It was a painful but gratifying process to me. Reading her journal entries and reviewing my own detailed journal for the first time since she had died, the story emerged in two voices, a mother’s and a daughter’s interpretation of the same events. The reading and writing felt like an intimate and prolonged visit with my daughter that moved me to another level of acceptance.

The goals for writing my book, Curtain Call, are being met daily. I wanted to make an accurate, permanent family archive for my grandsons. That was accomplished the day my manuscript was completed. And I wanted to show the world that there are many unsung, everyday heroes in our midst like Dee Dee. With each new person who reads Curtain Call, I believe that goal is being met.

Elie Weisel, the great philosopher and Holocaust survivor, once wrote, “Anyone who has lived through a tragedy must tell the story.” I know that my decision to publish Dee Dee’s journals was right. I believe it would make her smile to know that the journals she wrote continue to do the work she was forced to leave undone. AIDS took her voice but not her message. The show must go on.

From the December 2002 issue of Personal Journaling.

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