My Writing Life: AIDS and Words on the Page
My Writing Life: AIDS and Words on the Page
I’ve been writing forever. A poetry contest winner in high school. (My God, I would never share that poem with you!) Assignments in creative writing classes in high school & college. A fair attempt at a sonnet. Lots of stumbling around in short stories. Attempts done while I was teaching high school English.
But though I began to pile up short stories to try to get published in women’s magazines, the writing wasn’t what they wanted—though small journals like Greens Magazine and The Nebraska Review did publish my stuff.
MEDICINE AND WRITING
I’ve written a lot about my heart and mind being captured and enthralled with medicine. It started because I wanted to know definitively how and why my father died so young. I found myself drawn to any article about medicine. But then it tugged harder, because suddenly every publication I read was talking about a mysterious illness that finally got a name AIDS—Acquired Immune Deficiency Syndrome.
Definition: a disease that is the final stage of human immunodeficiency virus, or HIV, which attacks the immune system similar to other autoimmune diseases and leaves the body susceptible to other diseases and infections.
THE BEGINNING OF OUR UNDERSTANDING OF AIDS
When these articles began to appear, you could easily go on and live your life and not be aware of what was happening—unless you cared. Unless you were on the lookout for information. Unless you were connected with the gay community. Gay men were dying, in great numbers. But that allowed many to turn away. A dear childhood friend, a boy I had a crush on in high school, died in the early eighties. I knew he was gay. But it took me awhile to realize that he had died of AIDS. His family claimed hepatitis.
But the drip, drip of news continued. If you read, you began to put things together.
RYAN WHITE, BARBARA FASSBINDER
Ryan White. A boy and not a gay man, died on April 8, 1990 just before his high school graduation. Ryan was a hemophiliac and doctors realized that he became infected with HIV from contaminated factor VIII blood treatment. This diagnosis was made in December of 1984. Ryan was given only six months to live. When he tried to continue his education, parents of the children who attended his school rallied against him. This was concurrent with the medical community beginning to understand that AIDS was not an airborne disease. That it spread solely through body fluids. It would take years for people to understand this.
In 1990, Congress did pass a major piece of AIDS legislation, the Ryan White CARE Act, after White’s death. The Act has been reauthorized twice; Ryan White Programs became the largest provider of services for people living with HIV/AIDS in the U.S.
Another major development was the death of Barbara Fassbinder, one of the first health care professionals to be infected with the Aids virus. I was an L&D RN when she died. Her story?
Fassbinder liked to garden. She had small cuts on her hands when she provided care to a patient in the ER at a hospital in Prairie du Chien, Wisconsin. She was pressing a bandage onto a patient’s wound when the patient’s blood mingled with hers through her small cuts. She did not know she had contacted AIDS until she tried to give blood in 1990. Once she was diagnosed, she began to travel to warn other healthcare workers about the dangers of infection. When Fassbinder died in 1994, Universal Precautions had altered the care in all hospitals in the United States.
AIDS and UNIVERSAL PRECAUTIONS
When the CDC adopted Universal Precautions, the public became aware that the medical community was doing all that it could to protect patients and healthcare workers from AIDS, a blood borne infection, as well as other blood borne infections and air-borne infections. Whether you are seeing an RN for an injection, having major surgery at a hospital or surgery center or delivering a baby—universal precautions are in place. Below I have listed the Standard Precautions that apply to all patient care, regardless of suspected or confirmed infection status of a patient, in any setting where health care is delivered.
Use of personal protective equipment (e.g., gloves, masks, eyewear).
Respiratory hygiene / cough etiquette.
Sharps safety (engineering and work practice controls).
Safe injection practices (i.e., aseptic technique for parenteral medications).
Sterile instruments and devices.
Clean and disinfected environmental surfaces.
Specially marked red bags remove all used materials from the hospital room or surgical suite. All personal are gloved, gowned, their noses and mouths covered with a mask when in the surgical suite. Doctors and nurses at the operating table have prewashed their hands under strict guidelines, like sinks that are operated without touching faucets. They are then gloved and gowned with the help of the circulating nurse so that they don’t touch anything in the process.
Once, working at the surgical table, my glove was punctured by a needle driver. I had to step away from the surgery, be replaced by another RN and immediately see a doctor whose basic job is to draw my blood, prescribe medication, and track my care to make sure my blood has not become contaminated.
MY WRITING LIFE
Even before my work as an RN, I had read pages and pages about AIDS and written and rewritten a story entitled TIES—a rather long story that attempted to deal with the throes of anger and hurt, depression and misunderstanding that a family might deal with when they discover a family member has AIDS.
It’s not a very good story. Probably the only paragraph where I might have caught the angst of this time period when families were trying to figure out WHAT THE HELL IS HAPPENING, is when I wrote about the main character remembering a family photo.
Amy is the sister to Rick, who has died from AIDS. Rancher is her other brother. Because of AIDS, the father had left the family. Marilyn is their mother.
And it’s there, at the bottom of the box, in a heavy gray cardboard folder with the name of the studio written on a slant. Amy eight, in a party dress, hands folded in her lap; Rick five, his hair so light, it vanishes into the walls of the background. Rancher next to Amy, and then their mother Marilyn, in a rumpled skirt, her hair, smooth, shiny, pulled clear off her forehead. Just the four of them there, looking out.
TO GET AN UPDATE ON AIDS, read the following article that appeared in the LATIMES
HIV Prevention Progresses, But Vaccine Is Still The Goal
Photo credit: ME
