AIDS Proves to be an Eye-Opener for One Mother and Son Jennifer Harper

The flickering light from the 15-inch television screen plays across Adrienne Castleman's frail body as she sits in the bedroom of her Medford home, waiting. Clad in her standard plaid pajama bottoms and bright purple tie-dyed T-shirt, she has been awake for a couple of hours. She hasn't found the strength to come out of her room yet.

At 46, Castleman's body aches. She feels like she just ran 20 miles. Her muscles hurt while she waits for her medication to reach them. Precious, her 80-pound Rottweiler, sits at her feet offering comfort. "She is my compassion pet," Castleman says, looking down at the huge dog. "We're both kinda screwed up, but we still have the will to go on."

Precious suffers from the aches and pains of arthritis.

Castleman suffers from full-blown AIDS. As far as she knows, she was the first woman to test positive for HIV in Southern Oregon. For 14 years, she's been trying to gain control of her illness, her life and her relationship with her son.

Before she can talk about it, before she can tell her story, she needs coffee. Carefully maneuvering herself out of bed, she grabs an insulated lunch box that holds 22 bottles of pain medications and heads for the kitchen. With Precious in tow she settles into her recliner to enjoy the first of what will be many cups.

"I need to wake up," she says as she slowly pulls her dark brown hair into a clip. "You still feel tired when you wake up, no matter how much sleep you get."

Castle-man's chair is her command center. To the right sits a bookshelf she uses for her phone, a lamp, her cigarettes and all the things she will need throughout the day. Two cozy blankets rest on the back of her chair, for when she will inevitably fall asleep later. Within reach to the left is a plastic filing cabinet that is supposed to help her get organized, but instead usually ends up housing odds and ends. Stacks of paper lie at her feet, awaiting attention.

Castleman reaches down and pulls a piece of paper out of her wallet. Yellowed and faded, it is held together by tape. She has kept it as a reminder of the past that predicted her future.

The paper is the obituary of a companion who died in 1994 at age 35 from AIDS. He, she believes, is the source of her illness, the reason for her pain.

Gary and Castleman started seeing each other in September of 1986. She met him through her ex-husband Ron. Gary was as strong and husky as Adrienne was thin and vulnerable. She says he also was abusive. Even so, she stayed with him for four years.

The first signs of Castleman's illness appeared in early 1987 when she went to the doctor with swollen glands that had spread to her groin area. When her symptoms didn't subside, the nurse at the office advised her to get an HIV test. Castleman had heard about AIDS but thought only gay men contracted it. The nurse drew her blood for the test and asked her to come back in a couple of weeks for the results.

She returned two weeks later with her parents and Gary. The doctor asked her parents to wait outside while the young couple came into his office. When the doctor told them that she had tested positive for HIV Gary fell silent and tried to leave. He denied he was the one who had infected her and said he would get tested.

Trying to offer comfort, the doctor told Castleman that only 50 percent of people who test positive for HIV actually contract AIDS. She would find out later that he was wrong. She was 30 years old.

Castleman's parents dropped Gary and her off at home, where his silence quickly turned to anger. She needed to talk to him about her fear, but he only raged. She remembers walking to a nearby elementary school where she sat on the playground swings crying for hours asking God why. Why did this happen to her?

After many tears she decided to move on. She couldn't let this stop her. She had her son Ronnie to think about. "I pulled myself up by the bootstraps and said, 'Get up and start living,'" she says. "I was going to raise that boy."

At 9 years old, Ronnie was living with his father, Ron, in Shady Cove. Ronnie was a sweet, innocent boy with bright blue eyes. His mother was set against telling him she was HIV positive because she feared he wouldn't understand. She wanted to wait until she was more educated about her illness and could get them both into counseling.

She and Ron were both scared that Ronnie might "catch" her disease. The boy couldn't understand why his grandmother would sanitize everything from dishes to the toilet seat when he and his mother went to her house for visits. None of them had a clue how the disease might be transmitted and neither did the world back in 1987. The ignorance that went along with being HIV positive hit the family hard.

Eventually, AIDS began to erode Castleman's relationship with Gary. When she begged him to get tested, he would only boast his immune system was invincible.

A year later she had stopped talking much about her illness. Gary disconnected when she tried to draw support from him. She decided it might help if she attended a support group for HIV-positive people.

In late 1980 the only HIV support group in this area was held at OnTrack, a drug treatment program in Medford. Meetings were held a couple nights a week in a small basement room downtown. The majority of the group consisted of gay men. She was the only woman who attended.

She didn't care. The group confirmed that she was not alone. She was not the only one in this world dealing with this disease. She tried to share her new-found awareness with Gary, but he could not hear her through his fear and anger. She kept it to herself and continued going to the meetings.

In early 1990 Castleman began to take Zidovudine Retovir, also known as AZT, the first available antiviral drug to fight HIV. AZT was supposed to stop the virus from entering the cell where it would multiply. But because it is so toxic, she began to experience extreme indigestion and nausea every day.

Gary's drug use was getting worse, she says, and so was the abuse. Castleman was getting sicker and unable to cope with the stress of their relationship. Some days she couldn't bring herself to get out of bed. Gary would come home from work angry that she had not gotten up to clean the house. He didn't want to believe she was sick. She knew that she had to leave.

After she and Gary parted ways, Ronnie wanted to come live with her. Ron was against the idea and tried to talk Ronnie out of it. He told Ronnie that his mother was HIV positive. Ronnie was 12 years old and scared to death. He had heard about AIDS and thought his mother was going to die.

She was busy living, however. Leaving Gary meant that she was free - free to go out with her friends and meet new people. She started partying a lot and going to bars. She wanted Ronnie to live with her, but she also wanted the freedom to do some of the things she wasn't allowed to do when she was with Gary.

Ronnie was lost and started getting into trouble for petty crimes such as shoplifting and vandalism. Nothing was constant in his life. He changed schools every year, and his mother was not there for him. Although Castleman loved Ronnie, she was living destructively and her attention was not on him. He began turning to strangers more than his own family. He finally dropped out of high school and joined the Job Corps. Castleman was on her own.

She was getting sicker, and even though she began taking a combination of drugs to combat the disease, they made her sicker yet. She was constantly throwing up and always tired. Over the course of about three years she and her doctors experimented with different medicines, trying to get the doses and prescriptions right so that she would not starve and could live a comfortable life. At one point, the medications affected her joints so badly she was almost crippled. Her life had become a living hell.

To combat her nausea, Castleman began smoking marijuana. She had used it in the past at parties and with friends; now she needed it for other reasons. Her medications were ruining her appetite and by smoking a little in the evening she could eat at least one meal a day. It was illegal but worth the risk.

Gary was also starting to get sick. He had finally gotten tested and found that he was in fact HIV positive. Castleman still had compassion for him and would visit him at his room in the Medford Hotel. When he began to get Kaposi's carcinoma - lesions that show up on the skin but have roots that attach and grow into the internal organs - his family moved him to a nursing home. They didn't want Castleman around and refused to let her visit him. They believed she'd given him the disease, but she is sure he infected her. She found out through a mutual friend that Gary had died. His family did not have a funeral.

Ronnie returned from Job Corps when he was 18 and moved back in with his mother. He was no longer the child she remembered. Now that she had pulled her life back together, she wanted to be the mom he needed. But his understanding of her illness had turned to rejection. He had his own life to live, his own dreams to live out, and they were growing apart.

He did have strong feelings about HIV and AIDS, and when he was 19 he decided to speak out about it. He decided to go into local schools to talk about his experience and perhaps let younger kids know they're not alone.

In 1999, Castleman stopped taking medication to treat AIDS and signed a contract with her doctor to be treated simply for her pain. Between painkillers and muscle relaxants, she takes 43 pills in a 24-hour period.

She also continues to smoke marijuana, but now it's legal. In 1998 Oregon voters passed Measure 67, the Oregon Medical Marijuana Act. This meant that people who suffered from such diseases as cancer, glaucoma or AIDS could get a permit that would allow them to grow and consume marijuana for medical purposes.

Castleman says the marijuana relaxes her stomach and her throat so that she is able to digest food and sleep better.

"I would be dead today if it wasn't for marijuana," she says. "I would have starved to death."

She doesn't want to know what her viral load is or in what range her T-cell count lies. "It's better not to know," she says. "It would make me focus on the illness."

As she waters the garden of houseplants in the front window, a dream catcher hanging on the wall distracts her. It's a web of yarn and leather that holds memories from her past - a ring found in the yard of her old house, an abalone shell from a necklace Ronnie gave her when he was little and feathers given unknowingly by wings of birds.

When Ronnie was little, he was her power to survive. He grew to accept her illness, but it's become more difficult in the last few years. "He lives every day knowing that I'm going to die," she says.

They are so different now. The love they share is strong, but he holds resentment for those days when he had no one to talk to, and she feels guilt for not always being there for him. She still hopes for a day when she will look into his eyes and find some of that sweet innocence she used to see.

Tonight, she's alone again. The sun is setting, and so is Castleman's energy. She becomes shaky and her speech starts to slow as hot flashes set in. She lights up, hoping that each inhalation of marijuana will bring her some comfort and wake her up enough to be able to eat dinner. It will be her first meal of the day.

As she watches one day turn into another, she says she isn't sure why she is still here.

"God has a purpose for me," she says. "I don't know what it is, but he must."

 

© 2001 Mail Tribune, Inc. All Right Reserved. Reprinted by permission of Mail Tribune, Inc.

Jennifer Harper lives with her son in Medford, OR. She is earning her bachelor’s degree in journalism at Southern Oregon University. Jennifer worked as an intern at Life Challenges during the summer of 2001. Her focus is on feature stories, but she hopes to pursue a career in public relations one day. Contact Jennifer c/o info@lifechallenges.org.