I Wear a Red Ribbon
by Debbi Hood Johnson
People often ask me why I wear a Red Ribbon. Some people ask the question simply to find out what the ribbon means, but other people are really asking a hidden question: they wonder what experiences in life has moved me so that I would want to wear a Red Ribbon, a visible reminder to all who see me of the continuing battle against HIV and AIDS. They are asking why I, a white heterosexual female in the heart of the conservative South, would choose to take an often unpopular stand, instead of quietly going about my life. Unknowingly, they are asking about my husband, BJ.
BJ made me his wife, but AIDS made me his widow. He died in my arms at 1:45 A.M. on Monday, May 17, 1993, in the little white house we had moved into only two days earlier. Surrounded by packed boxes filled with our books, our music, our photographs,and other mementos of our life together, we lay in the dark on the hospital bed provided by Hospice. Consumed, at this point, by massive brain lesions caused by PML (Progressive Multifocal Leukoencephalopathy), Beej had lapsed into a coma hours before.
Earlier that day his wonderful parents and our supportive friends, our "family of choice," had come, encircling his bed to say their soft good-byes, kiss his cheek gently, and whisper final messages into his ears as the room began to fill with the loud, bone-chilling sound of fluids collecting in his lungs as he struggled to breathe.
In our private final hours, I sang to him, prayed over him, and recited the 23rd Psalm over and over as I carefully brushed his long hair. I reminisced aloud about how we met and some of our favorite "heart snapshots"-- those special memories and private jokes and tender moments we had shared for so long. I chose to believe BJ could still hear me through the curtains of his coma.
As I sang one of our most special songs to him, I suddenly noticed my voice was no longer competing with the loud gurgling "death rattle" of BJ's breathing. I sat up on the bed and saw that his eyes were open-- he was looking at me. I knew he could really see me once again and that he could see that I was truly with him until the end. His face looked so serene, with a slightly lopsided grin.
"Go ahead, sweetie," I whispered hoarsely as I held him,"it's okay to let go now." As I kissed his lips for the last time and felt his life leave his body, my hand stayed on his chest, where his body heat remained the longest. I sobbed as I felt the chill spread; the warm spot over his heart grew smaller until it was no more. Another brave warrior in the fight against AIDS had fallen.
Why do I wear the Red Ribbon? I wear it because I CAN. I am still alive, still able to carry the message about the reality and urgency of AIDS and how HIV can be prevented. I carry this message for those whose voices can no longer be heard but whose presence can still be felt. What message is that? I carry the message-- to all who will hear AND listen-- that HIV/AIDS is, at this point, 100% FATAL... but it is also 100% PREVENTABLE.
I carry the message that Persons Living with AIDS (PLWAs), or-- as I heard recently from a feisty long-term survivor-- PLISOAs (Persons Living In Spite of AIDS) are PERSONS first and foremost:
persons who have families and loved ones,
persons who have dreams and hopes and fears,
persons who laugh and cry,
persons who deserve the same respect as you and I.
The gay community, for more than a decade, has shown us an incredible example of what unconditional love and honest, unflinching AIDS prevention education can accomplish. What about the rest of us? Where are the mainstream churches? I have been dismayed by stories of persons picketing AIDS funerals with hateful signs or quietly asking HIV-infected families to leave their congregations so that the tithes and offerings won't diminish.
I know that these hurtful actions are not the only witness of churches. Others have heeded Jesus' message in Matthew 25:35-45 ("...I was sick and you visited me...").
When I wear the Red Ribbon, I am demonstrating my compassion and care for people living with HIV/AIDS, my determination that those who have already died from AIDS-related causes will not be forgotten, my support for the ongoing efforts of all AIDS service organizations and researchers, my respect for the dedicated caregivers, and my desire to educate others about how to halt the spread of this obscene plague.
I can think of many other reasons to proudly wear the Red Ribbon, and these reasons have names and faces:
Bill, the first PLWA I knowingly met and for whom I became one of Charlotte's first volunteer AIDS Buddies;
David, the quiet man whose face had become a macabre mask of purple Kaposi's Sarcoma lesions;
Daphne, the woman who fretted about who would care for her children after she had died;
Tony, the entertainer who hung himself in desperation, afraid of how AIDS would continue to ravage his mind and body;
Curtis, the proud African American who had such a big heart and tried to alert his community to its risks before his life was cut short one Christmas;
Little Jessica, whose panel in The NAMES Project AIDS Memorial Quilt haunts me to this day with its stuffed animals and baby blanket;
Ryan White, whose unyielding courage showed the world that AIDS might sap his strength but never bend his spirit;
Ron, whose independent streak continued until he drew his last breath in his apartment, surrounded by his friends and beloved cat; and
BJ, my sweet, gentle husband, who never passed up an opportunity to speak to groups to educate them and to "put a face on AIDS." AIDS finally robbed him of his speech, his mobility, his bodily functions, his smile-- but never his dignity.
There are those who believe the Red Ribbon has lost its meaning, that it's only an empty symbol now. I disagree! As long as my Red Ribbon gives someone the opportunity to ask me aquestion about AIDS, or gives someone the strength to go throughanother day encouraged by this small sign of support and solidarity, then its message is very clear:
The Red Ribbon simply means that I care.
Copyright © 1994 by Debbi Hood Johnson. May be reproduced in print publications in its entirety with copyright notice and author's name as long as no income is made from it, except in the case of fundraisers for HIV/AIDS programs/projects. We also ask that Computerized AIDS Ministries, General Board of Global Ministries, The United Methodist Church, http://gbgm-umc.org/cam/ be cited as the source. In the case of web sites, we welcome links to this page.