By J. D. Moss
“Why do you always let your pants hang so low?”
I roll my eyes as I put my tray down. My sister, who has been following me to the table, moves around me to the other side. I grab my chair, refusing to acknowledge her remarks.
“Pull up your pants!” Her voice is louder.
I look around the cafeteria and pull up my pants, half out of instinct –half to stop any further embarrassment.
“What did the doctor say?” I move the conversation to the reason for her visit. She has taken off work to see a doctor at the hospital where I work.
“Not much.” She shrugs and prods her salad for something more than lettuce. “They think it’s a flu. I should be fine in a few days.” She responds and pops in a mouthful of green.
“You probably picked it up from your kids.” She again moves layers of lettuce around her plate.
“You sure you don’t want something else?” I ask.
This time it is she who rolls her eyes. Sharon and I have been overweight ever since we hit adolescence and as we have grown in age, our bodies have expanded from plump to obese. I have been dieting and recently lost twenty pounds. Sharon looks like she has gained my lost weight.
“Mom’s worried about you.” Ignoring me, as I had ignored her before, she too moves on to a new subject.
“Why?” I am now getting the feeling her visit isn’t just to spend time with me.
“AIDS.” She says, without missing a beat or a bite. Sharon has never been one to worry about sensitive subject matters. If she has something to say, she says it.
“I’m not Ronald.” I respond. Our mom has been in extreme protective mode since our older brother died from AIDS-related causes. Soon after his death, she asked me to be tested, which I did. I tell my sister I understand Mom’s concern, but remind her I am still deeply committed to the church and will not have sex until I am married. I have not told them I am gay, yet I am being truthful; I am not having sex.
Sharon says she understands, but I still need to be careful. AIDS kills and Mom is worried. I promise my sister what I have already promised my mom; if I ever have sex I will use protection.
“Do you know how to use a condom?” Her face is covered with a giant grin. She enjoys making me uncomfortable. I notice how beautiful her face is despite being overweight. She has always been a remarkably pretty woman.
“I’m not that much of a nerd.” I protest. Her grin deepens to a smile as she opens her purse and pushes me a bag of condoms. Speechless, I quickly grab them and put them in my pocket. I object to her actions, yet know she has done this because she loves me, and I keep them until they expire.
“All these symptoms they have no explanation for, all those tests they can’t explain.” Mom’s voice is calm – too calm for where we both know this conversation is headed.
“We need to ask the one question no one wants to ask, Mom.” My voice is just as calm. We are alike, Mom and I, when things are at their worst, we can almost always compose ourselves. We do what needs to be done, face what can no longer be avoided and do so with controlled emotions and serene clarity. Some mistakenly think we have no emotions. We understand the opposite is true. When the crisis is done we grieve in deeply profound ways. Now is not the time for such relief, now is the time for action.
“I’ve told Sharon to ask the doctor to test her, but she won’t do it.” Mom’s voice is frustrated.
“You need to convince her to get a new doctor.”
“I know.” Is all she can muster.
I feel tears forming, yet know my mom does not need my tears, she needs my strength; not that her strength could not carry us both, yet she has already lost one of her children and if what we think is true, it means accepting the loss of her youngest.
A few weeks after this conversation the phone rings as I am washing dishes.
“Hello.”
“David.”
Instantly I know something is wrong. Underneath her words I hear pain and know what she is about to say. “Sharon has a new doctor. The first thing he did was test her. The test came back positive. She has HIV. She has been living with the virus for years. She has full-blown AIDS. She has had that for a while too. They give her no more than six months.”
My mom has given me a list of facts that confirm the reality we feared. Each word brings a new pain, a new tear that we are not willing to release because the person who matters the most at this moment is Sharon. On August 28th, 1992 the doctor gave my sister her death sentence. He did not know it was her birthday.
It still seems inconceivable that Sharon was allowed to live with HIV and AIDS for so many years without being tested or treated. What was even more surprising was one of the reasons given for not testing her sooner was that she was a woman. Even when trying to give a fair evaluation to the timeframe in which she lived, it is still hard to accept.
In the beginning of the AIDS epidemic, it was easy for the world to believe it was a “gay cancer.” This allowed most to think it was only the problem of the “Patient Zero” group. It gave the nation someone to blame, along with the false belief it could not happen to them.
My sister was a victim of this mistaken immunity. She was a young heterosexual woman living in a monogamous relationship. She was a wife and mother. A woman who did not use intravenous drugs and had not had a blood transfusion. On the day she was handing me condoms, she did not think to keep one for herself.
Even as awareness of HIV increased and medical professionals warned that in other countries the gay community was not the victim majority, that HIV could be transmitted through heterosexual sex, the focus for treatment and prevention sidestepped the larger heterosexual community.
When my sister started getting sick she was not considered a risk group. Still, she spent years in and out of the hospital with symptoms that were common with the “Gay Cancer” – still no one wanted to notice.
When she was diagnosed, the resources available for a married woman with three children were almost non-existent. In a July 1993 journal entry, I wrote that my sister was weak most of the time, yet still dragged herself to work because she needed the insurance to pay for her treatments. She was having a difficult time getting eligibility for federal financial or medical help.
It would be of some comfort to believe that the sexism my sister faced is no longer a factor for HIV in 2008; unfortunately, even though there has been some improvements in the U.S., women overall are still at a disadvantage when it comes to education, diagnosis, and treatment of HIV and AIDS.
According to a November 12, 2008 BBC news report, there has been a global progress in the political, educational, and economic spheres in regards to gender equality, yet the gap in healthcare equality has widened. The Centers for Disease Control and Prevention (CDC) now estimates the number of new HIV infections in the U.S. is higher than first reported. The lower number may have helped justify the reduction of federal funding for HIV / AIDS prevention in the U.S. and to demonstrate that abstinence-only programs help reduce the number of people infected with the virus.
The new numbers show these programs have only a limited effect. It is now estimated that men who have sex with men account for 53 percent of new infections in the U.S., yet infection rates for minorities are disproportionately affected and it shows that the infection rate for heterosexual women is twice the rate of heterosexual men. NPR reports worldwide there are more women infected with HIV than men. Abstinence-only programs create a greater danger for married women or for women in what they think is a monogamous relationship. Women are told to refrain from sex until they are married, yet are not taught to protect themselves from infections from an unfaithful spouse. Nor is the human side of love and relationships addressed.
In the U.S. more and more couples are choosing alternatives to marriage. HIV / AIDS funding does not address this growing category, choosing to emphasize the moral correctness of marriage and ignoring the social and cultural trends of the population.
The danger to women can best be seen in developing countries where married women are more likely to contract HIV than those who are unmarried and having sex. The Bush Administration’s $15 billion dollar AIDS relief plan uses the “ABC” approach: to promote abstinence, being faithful, and condoms. At least one-third of this money must be used on abstinence-until-marriage programs. A CARE report says that these programs “do not fully address the challenges that women in the developing world face in protecting themselves and their children from HIV infections.” This report stresses that in the real world, many women do not feel they have a right to refuse sex. Most women do not question their husband’s faithfulness; even if they did, they remain because they have no other means of support. Other women engage in sex for survival. In these cases, the use of condoms may be the best choice, yet a surprisingly large number of women do not know they have this option.
CARE reports to have HIV/AIDS programs in 39 countries, and says, “Women are disproportionately affected by the AIDS pandemic.” The simplicity of the current programs supplied by the U.S. is not enough to protect women. CARE offers a range of strategies they feel will help, including economic support to women so they do not need to rely on men who they cannot trust, public health infrastructure, access to family planning, protection from sexual violence, living support for the poor, and social empowerment.
The successes seen in the prevention and treatment of HIV, contrasted with the repeated failures, shows that what my sister faced in the nineties continues to be a disturbing clear picture of what women face today. Education, social services, and medical treatment are not equally distributed to women and minorities and it is they who are losing this ongoing battle.
Her body is no longer hers. She owns no real possessions. She cannot work, cannot take care of herself or her children. All the money she receives comes from those who love her and agencies who are obligated to give it to her. None of it is enough to take away the worry of needing it. Clothes hang on her as loosely as her skin. Even if she had the most expensive clothes, which she does not, they would not give her back her beauty, so jeans and a t-shirt are enough. She has been stripped of everything she once thought of as important, everything except her incredible spirit and her children.
The elevator opens onto the long-term rehabilitation unit at the hospital. I mindlessly turn to my right, passing by the nurse’s station on my way to the patient lounge where Sharon is having lunch. She sits in a wheelchair pulled up to a table, barely eating from the tray in front of her. She looks tired, a common look for her. In a few months it will be four years from the day she was first diagnosed with HIV /AIDS. She has always been determined and stubborn. Those traits have been helpful, yet the real reason she has defied the odds and outlived all expectations is her love for her children.
From the day she was given the news, she said she would not be gone in six months. She planned on staying around much longer so she could spend time with her kids. She would not exit this early in their lives, she would be there for them – and she has. In four years she has had a number of doctors, been in and out of hospitals more times than any of us can count. She has had almost every infection and illness associated with AIDS, most more than once. She has been sent to Christopher House, a hospice created for AIDS patients, five or six times. For most of its residents, it is the last place they go to live. Each time she has checked in she has left breathing.
As I walk toward her, she follows my every step. When I sit down next to her, she simply shakes her head and in a voice so low I can barely hear her, says, “You are such a nerd. I love you but you are a nerd.” I smile and cannot understand why I used to get so angry with her for calling me that name.
“Did you have a good Easter?” Her face lights up as she thinks about the day before.
“The kids were great, it was incredible.” She reaches over and lays her hand on mine. The hand I see looks more like my grandmothers’ than my sisters. “I’m checking out of here soon.” Sharon came to this rehab to build muscle strength so she could go back home, yet it does not seem to be helping. “I want to tell you what I told Mom.” She moves her hand off of mine and slowly lifts a cup of water to her lips; weakly sipping on the white plastic straw inserted within. “I’m done fighting.” She places the cup back on the table. “I just wanted one more Easter with the kids. I’m too tired. I don’t want to fight it anymore.”
“I understand.” And I do, not in the way she does, yet, I understand in my own way. “Is there anything I can do?”
She again shakes her head at me. “Go back to work. Live.”
I smile –stand, and give her a hug as she pats my hand as I do so. As I walk away, I hear her loud clear voice.
“Pull up your pants.”
I stop at the words and turn to face her. Smiling, I place fingers from both hands in my belt loops, slid my pants down as far as they will go without embarrassing myself, take my right hand and pull my glasses down on the tip of my noise. Sharon shakes her head and I think I see a grin. Turning, I step into the next arriving elevator, giving her one last wave. As the doors close I remove my glasses, pull up my pants and cry.
04-15-96 Wednesday (Portion of a journal entry)
Tonight I went to Christopher house to visit my sister and Mom. Sharon has been unconscious since Sunday night. No more then twenty minutes after arriving home, my mom called to tell me Sharon had died. This was around 10:30 pm.
She fought a long hard battle. I love her so very much and will miss her deeply.
Copyright ©2009 by J.D. Moss –All Rights Reserved