Paul's HIV / AIDS Story

Paul

When you ask Paul what he thinks the biggest issue is facing those living with HIV today, one word immediately comes to mind: “Ignorance.” By that, he simply means a lack of knowledge or information, which can be on the part of someone newly diagnosed as positive, or on the part of a friend, relative, or co-worker, to that person. 

Paul has had many opportunities to confront this problem head-on through his work at the Resource Center in Dallas, Texas. For the last four years he’s been volunteering there three days a week, manning the front desk. Whether he’s guiding the newly diagnosed to available benefits and services, speaking up at support groups, or acting as an intercessor for the Spanish speaking HIV/AIDS community, Paul is committed to clearing up misinformation in all of its forms. 

Recently, a call came in to the Resource Center from a fearful woman whose brother-in-law was coming for a visit. Paul remembers, “[He] was going to be living with them for a period of time and she knew that he was HIV+, and she was asking all kinds of questions like, ‘Oh, can we use the same dishes? Can I wash his clothes together [with ours]?’ you know. She really did not want him living there at all and she flat out told me that: ‘I don’t want him here.’” But there’s no judgment in Paul’s voice as he relates this story; he saw that phone call as an opportunity to inform the uninformed – and so that is what he did. Sometimes, as was the case with this story, Paul does not know the outcome, but he keeps the faith that with correct information, people will make good decisions.

Paul is proud to also point out that sometimes he gets the chance to clear up misinformation in a way that can literally save a life. “There’s another call that really sticks in my mind,” he recounts. A young woman who’d been recently diagnosed was on the line, and she was suicidal. “I was on the phone with her for well over an hour, and when she found out that she could actually have children and not pass on HIV to the baby, she – that just made her life. The whole thing turned around for her then and there. [Before the call] she just thought her life was over.”

Being able to make such a significant difference in moments like this, it is little wonder that Paul says of his volunteer work: “I get back way more than I give. It’s just really, really rewarding for me.”

Paul has lived for years in the Oak Lawn section of Dallas: “I hardly ever leave this area… because everything is close by, healthcare and everything… In this area [HIV/AIDS] is just, you know, more accepted.”  But he didn’t always live amid such acceptance. He grew up in a small community in New Mexico where the only known gay person in town was mockingly referred to as, “that f*ing faggot” by Paul’s own mother. So in 1989, two weeks after high school graduation, Paul headed to Dallas, Texas to create a life for himself with others who better understood him. 

As a sexually active young man, Paul tried to be safe and responsible by getting himself tested every six months. But in 1992 a sex partner knowingly exposed him to infection. When he received the resulting HIV+ diagnosis, Paul held no bitterness towards the other man; instead, he accepted his own responsibility in the matter. As he says, “I never really, like, blamed him specifically… I was drinking that night, you know, and I knew what I was doing.”

Paul admits that he’s made mistakes in the past, and this drives him to speak out now; he doesn’t want others falling into the same trap.

Through his volunteer work, he sees a new generation, those in the 15 – 24 year old range, come in for services. Unfortunately, some of those youths are living with brand new misconceptions. Paul points out that this demographic has come of age in a world where anti HIV medications are advertised in magazines, with pictures of smiling, healthy, good looking models hiking through the wilderness. Paul suggests, “if something is glamorized…It’s not considered such a… bad thing anymore… So [they think] ‘why worry about infection...’ ” 

Even though the medication has vastly improved over the years and become much less of an inconvenience (Paul is down from a high of 30 pills per day to two or three today), HIV is still a deadly virus. If you stray from treatment you can die. 

Paul witnessed this first hand. There was a period of time, after living with HIV for nearly 15 years, when Paul went off his meds. He’d lost his job and was having a tough time financially – struggling to pay the rent and not knowing where his next meal was coming from. Taking his meds had fallen, he says “way, way down” on his list of priorities. After so many years on various drugs, Paul was experiencing what he calls, “treatment fatigue.”  It is not uncommon for people fighting any long-term medical issues to tire of treatment, for reasons ranging from challenging medicinal side effects to strict requirements for medications (i.e. take on empty stomach, take with food, take every 4 hours nonstop, refrigerate only, etc.).  When both he and his partner lost their insurance and continuing with their medications became even more difficult, they started to miss doses. At first, they both felt fine without their medications, but after only a few short months, Paul developed Kaposi’s Sarcoma (KS) on his feet and was unable to walk for a time, and then his partner was hospitalized with PCP Pneumonia and diagnosed with only a 9% chance of survival. 

During his partner’s hospitalization, Paul visited regularly, but one morning he found his partner’s bed empty and all of his partner’s belongings gone. “I didn’t know what to do. I froze.” In one scary moment he braced himself for the worst. Fortunately, his partner wasn’t gone - he’d been moved to ICU that morning becuase both of his lungs collapsed.  He spent 35 days in the hospital and was just under 100 pounds when he was discharged. That experience was enough to turn things around for Paul: in the future he would always seek help when things became difficult. “It took [both of us] getting that sick to get it through my head that I really need to [stay on my meds.]” Through a medical case manager at the County Hospital, Paul was directed to the Resource Center. 

Almost immediately after coming to the Resource Center for its services – like counseling, help with groceries, support groups for long time survivors – Paul began to volunteer. He first helped deliver food in the hot meals program before moving to the help desk. 

Now, four years later, Paul looks back at the difficulties that resulted from going off of his treatment. Considering the available help for people living with HIV in Dallas, and how he didn’t take advantage of that when he first needed it, Paul remarks, “I can kick myself… I had forgotten [these resources] existed.”  His desire to make sure that others are made aware of that same help continues to spur him on in his volunteer work. 

He excitedly recounts a story of a recent visit from a woman and her husband: “It’s a Thursday, the last day we are open for the week, and she said, ‘Is there any way we can get some extra groceries [because there are two of us]?’” Unfortunately, the woman alone could not get enough groceries for both herself and her husband, but when Paul learned that the woman’s husband was HIV+ as well, he pointed out that he could also get groceries - but would just have to join as a new client. Paul made a call to the facility that handles new clients and set up their appointment that moment. “They got over there in time, they came right back, and they got the groceries they needed for that week.”  

Paul uses understanding, knowledge, and education to approach his work. He striving to ensure that a lack of information no longer plays a role in the way people contract the disease, seek or administer treatment, or behave towards family and neighbors living with HIV/AIDS.

Because good nutrition is critical in supporting the immune systems in persons living with HIV/AIDS, The Elizabeth Taylor AIDS Foundation (ETAF) has funded the food assistance program, including the pantry where Paul volunteers, at Resource Center in Dallas, Texas.  You can learn more about these two organizations by visiting www.myresourcecenter.org and  www.ETAF.org or by downloading the free Elizabeth Taylor AIDS Foundation app available on iPhone, android, and tablet.