Long-Term Survivors of HIV and Wellness
No Longer an Oxymoron
It was early 2001. I remember thinking it was not like Joey to be late. I'd known him for several years and he always arrived for his appointments early or on time. He was now 15 minutes late and I had begun to worry. The phone rang and instinctively I picked it up, thinking it might be Joey on the other end. "Hello?" Nothing. "Hello?" Still nothing. Then muffled crying. "Joey? Is this you? What's the matter?"
After several minutes, I learned Joey was trapped in a bathroom several blocks away. He had gotten off the bus on his way to see me because he had an urgent need to relieve himself, but barely made it to a gas station bathroom. He had no clean clothes and was too embarrassed to leave. Luckily, he had a cell phone and called me.
Joey was 35 when we met in 1998 and had been HIV-positive since the late 1980's. He had been on various HIV-related medications, but his health continued to deteriorate. Joey worked as an attorney, but the pace of his work was becoming more difficult to manage as his disease depleted him more and more. To complicate matters, he and his partner (also HIV-positive) were addicted to crystal meth and their relationship had become violent. At the time of this phone call, Joey had lost his job, left his home, and was barely managing to survive in homeless shelters. He had resigned himself to a very short future, and was focusing on putting his meager resources in order for his family.
I scurried around my office to find clothing I could bring to Joey where he was stranded. I knocked on my office mates' doors and was able to find a shirt, sweat pants, and a jacket. When I reached the gas station bathroom and knocked on the door, Joey was still crying softly. He opened the door a crack and I handed him the clothing. "I used to be somebody, Jeff," he whispered. "I used to be somebody."
A 42-year-old transplant to Chicago from New York City since 1998, Ken described his time in New York as the best years of his life. He remembered an active social life, involvement in a 12-step recovery program for substance use, and a career as an emergency room nurse. Diagnosed with HIV in 1991, his health deteriorated rapidly with one opportunistic infection after another. He came to Chicago to make a fresh start, but quickly relapsed on multiple substances and processes (alcohol, narcotics, and sex). He came to see me initially because his nursing license had been suspended for writing false prescriptions to maintain his habit and he was mandated to see a therapist, among other activities, in order to lift the suspension.
Ken had a small apartment on the north side of the city that he managed to keep due to a small inheritance from his parents. He was unable to work in nursing, however, because of his suspended license. His health also compromised his ability to maintain other steady employment. He subsidized his income with short-term temporary administrative jobs, many of which paid him in cash.
"What's the point anymore, Jeff? None of my friends live in Chicago, and most of my friends from New York are dead. I don't have any energy left," he shared with me in March of 2000, after being discharged from the hospital because of a bout with pneumonia.
"I had to give my dog away," Mark shared with me in our first meeting in 1996. "I can't even take care of her, let alone myself." He stared at the floor and bounced his leg up and down as he waited for my response -- and for the judgment he feared I would share with him. I quietly invited him to tell me more.
Mark had left a successful position in real estate voluntarily. He was 45 years old at the time and had saved enough money to be unemployed for a short while as he explored alternative professions. Originally from a small town in Iowa, Mark had come to Chicago as a teenager who realized that he could not safely be gay in small town Iowa. He worked to put himself through college and was active in Chicago's gay social scene of the 1970s. "That was an incredible time in my life," Mark shared. "But it also resulted in alcoholism and HIV."
During the first year of our work together, Mark exhausted the money he had saved and began doing temporary day labor as jobs arose. Eventually, his health deteriorated to the point of not being able to work at all and he applied for and began receiving disability payments. His body changed as a result of both HIV and the medications he was taking. The pride he once felt from his physical fitness shifted to shame as he described his weight gain, sunken cheeks, and areas of lipodystrophy.
In 1999, I remember a session where I asked Mark to imagine what he would like his life to be like -- to close his eyes and think about where he would live, the kind of job he would have, and what his social life would be like. "I can't do that because it's not possible anymore," he said with resignation. With gentle prompting, he eventually shared: "I would live in a high-rise in Lincoln Park with views of the lake. I'd be working in real estate again and I'd feel hopeful. But I don't think that's going to happen, Jeff. It's too late now."
Joey, Ken, and Mark 2008
Joey, Ken, and Mark did not believe they would be alive in 2008. Or, if they were still alive, they thought their quality of life would be severely compromised. They had resigned themselves to illness and our initial work together was more about acceptance than it was about hope, wellness, and the future.
Today, Joey is working as an attorney again. He owns his own home on Chicago's South Side. He has a small circle of close friends, and has connected with a large extended family with whom he spends a great deal of time. He walks and exercises regularly. He plays tennis occasionally. He loves music. He laughs a great deal. His health is still a concern, but when a health issue arises, he is quick to address it.
Today, the suspension on Ken's nursing license has been lifted and he is once again working as an ER nurse. He has a renewed relationship with his sister and has forged a close relationship with a cousin whom he visits several times per year. He has also acquired a cat who he says greets him with anticipation upon his arrival home from work each day. He continues to have health problems, many of which are not a direct result of the HIV. And, he still hopes to increase his circle of friends in Chicago. Still, he says he is grateful for what he has and for how far he has come.
Today, Mark lives on Lake Shore Drive in a high-rise facing Lake Michigan. He works full time in real estate and recently was promoted to manage an office on the north side of Chicago. He has been sober for over 20 years and has a strong connection to the recovery community. In addition to having his own sponsor, he has three individuals whom he sponsors. He exercises three times per week and has lost 20 pounds. Mark has also invested considerable energy in his emotional and spiritual growth, attending a number of weekend workshops and retreats. He remains dissatisfied with the effects medications have had on his body (in combination with the effects of aging), but says he finds himself feeling hopeful more often than not.
Joey, Ken, and Mark, however, are not alone in this journey. Many men, women, and children diagnosed with HIV 10, 15, or 20 years ago were not expected to live long, let alone live with hopefulness and an attention to wellness. Certainly advances in medication and other interventions have played a major role in living "well" with HIV. There are other critical ingredients -- listed below -- to the lives Joey, Ken, Mark and similar others have created for themselves.
The power of relationships has been a healing force for each of the men discussed above and remains a healing force for all of us. Tapping into the power that comes from connection with others is a key ingredient to wellness. Of course physical health influences a desire to connect with others, but reaching out to others and, in turn, having others reach out to us creates a powerful synergy that contributes to a sense of purpose and well-being.
It is no small feat to face imminent death, feel resigned to this destiny, yet swiftly turn on your heels and walk in a different direction. The process of rebuilding a life, in many ways, takes more courage than the initial building. Each of us, when faced with an obstacle, has the choice to become resigned, or to learn and grow. Long-term survivors of HIV such as Joey, Ken, and Mark allowed themselves to be transformed from their experiences and courageously chose to rebuild lives of meaning and purpose.
Given the stories of long-term survivors of HIV like Joey, Ken, and Mark, it seems difficult to even consider humor an ingredient of wellness. And yet, I remember many instances of laughter even as each man shared incredibly painful and embarrassing experiences. Joey will consistently share with me his family's hardships, economic problems, and illnesses, but through the pain, he is able to make small jokes and sometimes, even chuckle. And now, several years later as he recounts the incident of me rushing clothes to him at the gas station restroom, he grins at me and chides: "Couldn't you have at least brought me some socks?"
While each person's sense of what is right and what is wrong may be different, the idea of having a sense of right and a sense of wrong serves as a foundation for all of us. Long-term survivors of HIV are constantly faced with others' judgments, their own feelings about their HIV status, and making decisions about self-care and risk. There are no clear "rights and wrongs" in this world, which requires that each person have some internal mechanism for recalibrating this process in response to constantly changing physical health.
None of the men I've described here would consider themselves religious, in the traditional sense of this word. But all of them, at this point in their lives, would say that spirituality plays a major role in how they currently live. Each has found a way to connect with some force that is greater than themselves. Ken's relationship with his cat is a nontraditional example as, for him, his cat represents a connection to all living things and some source of energy and "spirit" larger than his own. Joey has created this sense of connection with extended family, and Mark taps into "spirit" through AA and prayer. Regardless of the source, a belief in and connection to a source of energy beyond ourselves is a great source of wellness.
Long-term survivors of HIV face innumerable challenges. In many instances, the medical challenges of living with the effects of HIV take a back seat to the emotional and psychological challenges of dealing with impending death. For those people who have spent years preparing to die, finances have been exhausted, careers have been compromised, and loved ones have died or moved on in other ways. The prospect of continuing to live may become a frightening one, fraught with existential questions about finding purpose and meaning -- and a process of dealing with both tangible and intangible losses. Wellness takes on a new and different meaning for long-term survivors who are now looking at living indefinitely. While still comprised of what we traditionally consider wellness activities (healthy eating, exercise, entertainment, work-life balance, and other forms of self-care), wellness with long-term survivors is equally comprised of meaning-making and purpose-finding.
I didn't think that I would be using the word "wellness" in referring to long-term survivors of HIV, and yet here I am, discussing three people, each of whom have lived with HIV for close to 20 years. Advances in medicine have contributed to living with HIV, but attending to "wellness" with HIV is the task of each individual who chooses to live well. In a recent session with Joey, he ended as he has on many occasions: "Well, Jeff, it looks like I'm going to live."
Yes, Joey, it looks like you're going to live -- and it looks like you're going to live well.
Joey, Ken, and Mark are composites of some of the long-term survivors of HIV with whom I have worked. Their names are not actual client names and their stories have been constructed from the common challenges faced by long-term survivors of HIV.
Jeff Levy, LCSW, is a psychotherapist and the Chief Executive Officer of Live Oak, Inc. in Chicago's Lakeview neighborhood. Live Oak provides psychotherapy, consultation, and professional training. To learn more, visit www.liveoakchicago.com.
*from Merriam-Webster Dictionary Online.
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