Merlene Davis: Lexingtonian turns her HIV diagnosis into a book to help others

Lexington woman details her humiliation, depression

Herald-Leader columnistFebruary 5, 2012 

  • 'It's Up to Me' National Black HIV/AIDs Awareness Day observance

    What: Bluegrass HIV/AIDS Coalition-sponsored event with open-mike contest featuring singing and poetry, live music by The Resistance Band and HIV information. Contest winner will receive $100, and $25 door prizes will be given away hourly.

    When: 7-10 p.m. Feb. 6.

    Where: Swahili Elks Lodge, 1203 Versailles Road.

    Admission: Free, but you must be 21 to enter

    Learn more: Facebook.com/events/129592830494220

  • GET THE BOOK

    In the Storm Too Long: Refusing to Lose this Battle by Felisa Shelby is available at bookstores, Amazon.com, through Felisashelby.com or by contacting Shelby by email at fshelby92@gmail.com.

    RESOURCES

    How to get tested: The Lexington-Fayette County Health Department offers free, confidential walk-in HIV testing at 805-B Newtown Circle (last door at far end of building) 8 a.m. to 4 p.m. Monday, Wednesday, Thursday and Friday, and 8 a.m. to 6 p.m. Tuesdays. Call (859) 288-2437 or go to Lexingtonhealthdepartment.org.

Although there is evidence that the virus existed decades earlier, HIV and AIDS were formally named in the early 1980s after dozens of gay men died with symptoms now associated with the disease.

As the number of AIDS deaths rose, so did fear and panic, causing entire communities to react irrationally toward those who had contracted the disease.

Thirty years hence, far too many people associate the disease only with gays and intravenous drug users. And far too many people continue to shun and ostracize those living with HIV and AIDS.

Felisa Shelby of Lexington can testify to that.

Shelby, 40, was diagnosed with HIV almost 14 years ago, two weeks after learning that she was pregnant. She said relatives have publicly humiliated her, using her illness as a club to exact satisfaction for their anger with her.

"They stood out in the street, in front of people, outside, yelling," she said. "I was so angry. It was awful."

In the Storm Too Long: Refusing to Lose This Battle (Xlibris, $19.99-$29.99) is Shelby's autobiographical account of how she emerged from depression and thoughts of suicide and learned to live with HIV.

"If someone out there, after reading my story, knows of anyone going through this or a similar illness that could affect a person for the rest of their life," she said, "grab them by the hand and let them know they're not alone."

Shelby will be the featured speaker at "It's Up to Me," a gathering Monday highlighting National Black HIV/AIDS Awareness Day, observed annually on Feb. 7.

The event is sponsored by the Bluegrass HIV/AIDS Coalition, a group formed a year ago that involves AIDS Volunteers Inc., the University of Kentucky Bluegrass Care Clinic, the state Cabinet for Health and Family Services, the Lexington-Fayette County Health Department, The Hope Center, Volunteers of America, the Gay and Lesbian Services Organization, the Keeping It Real Neighborhood Institute, and House of Claiborne.

The coalition's chairwoman, Annette Pryor, said despite the wealth of information about HIV/AIDS and its prevention, many people cling to myths about the disease and how it is transmitted. Because that misinformation is widely accepted, people with the virus feel safer keeping their condition secret.

"Although HIV/AIDS patients are covered under ADA," she said of the Americans with Disabilities Act, "employers still try to find ways to get rid of them. People are still ignorant. People are not using their knowledge."

She said some people refuse to protect themselves because they think HIV/AIDS is a disease contracted only by gay men.

"This is not a gay man's disease," Pryor said. "It's not just about the prostitutes and the drug fiends."

Black women are contracting the disease at a higher rate because some lack access to care, some put their own health last, and some outwardly straight black males are secretly having unprotected sex with men.

A total of 8,121 HIV infections have been reported in Kentucky since 1982, according to the state Cabinet for Health and Human Services. Of the newly diagnosed cases in 2009, the latest year from which data is available, 59 percent were white, 33 percent black, 7 percent Hispanic and 1 percent unknown.

Young people ages 20 to 29 made up 28 percent of the new cases, followed by ages 40 to 49, at 27 percent, and ages 30-39, at 25 percent.

Nationally, women account for 25 percent of new HIV/AIDS cases in the United States, and nearly two-thirds of them are black, according to the Office of Women's Health in the U.S. Department for Health and Human Services. Most of these women got HIV from having unprotected sex with men.

"Everybody should be tested," Pryor said. HIV is generally detectable two to eight weeks after exposure, according to the Centers for Disease Control and Prevention. "The virus can lay dormant for a long time. You don't want to wait until it is full-blown AIDS."

Shelby agreed.

"If I hadn't found out I was pregnant, I probably wouldn't be here today," she said.

After her diagnosis in 1998, Shelby said she tried to live as if nothing were different. Her daughter was born HIV-negative (and continues to be healthy), but Shelby began to lose her will to live.

She would take the medication intermittently if at all, and she stayed home more and more. In 2005, her doctor told her she would be dead in a year if she didn't come to her senses.

"It took me from then until now to finally get it together," Shelby said. "I got so tired of laying around the house and letting the world control my life. I was tired of the world shaming me and embarrassing me, throwing my illness up in my face."

One morning she began writing her thoughts on paper as a means of lifting the weight off her chest. Shelby turned those writings into a book so she could help and inspire others who secretly suffer with a disease or condition that hasn't found favor in the public's eye.

She now speaks publicly about her travails at rallies or meetings. She also emphasizes prevention, especially to her son, who is turning 21.

"I stay on him," said Shelby, a mother of three. "I tell him to wrap it up."

Her health is fine, she said, and her viral load is undetectable.

"Thank the Lord," she said.

"I want people to know you are somebody regardless of what you have been diagnosed with," Shelby said. "I want them to know how I got from being HIV-positive to where I am today.

"I am blessed," she said. "I am truly blessed."

Reach Merlene Davis at (859) 231-3218 or 1-800-950-6397, Ext. 3218, or mdavis1@herald-leader.com.

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