Growing Awareness

By 1992, my life began to take on the stability, security, success and satisfaction I had wanted and worked for. I was living with two roommates in an apartment in North Buffalo, managing my manic-depressive illness through counseling and medications, and I was happy with the way my life was going. With the help of a counselor, psychiatric rehabilitation helped me begin to rebuild my life. I learned that psych rehab helps to teach an individual with a mental illness how to plan ahead, set goals, cultivate beliefs, and clarify values. In essence, it was building from the ground up.

Above all, I knew I had to keep busy. Structured daily activity is a catch phrase in the mental health field. Productivity of any sort was highly approved of. It would help me concentrate on things other than my own mental and emotional problems, strengthen my ability to handle stresses, and give me an opportunity to be with and work with others.

The mental health field had been good to me; it had provided me with rehabilitation, housing and the ability to work. I worked four hours a week for the agency that also helped me with housing; now I felt like I needed (and was capable of) more hours and more responsibility. I also thought it was time to test my wings by working outside the mental health agency. At the same time, I was uncomfortable and fearful that my diagnosis of bipolar disorder would interfere with, not my job performance, but my relating to other people. It was still a big secret.

I took the opportunity to volunteer at a local agency. I had friends who were working in getting a small, not-for-profit human services agency off the ground. The population: persons infected and/or affected with HIV/AIDS. Slick wording, but what it really meant was that the AIDS Alliance was there to help people who had the HIV virus and people with AIDS to get the help they needed. It also existed to help those affected by the disease, friends and family coping with a loved one’s illness. By and large, the majority of the persons in the office and drop-in center were fighting for their lives; they had been diagnosed as having been exposed to the HIV virus, the virus that causes AIDS. Some needed food, housing, furniture and household items; some needed help negotiating the social services and social security system, handling stigma, being refused services or being denied work when it was illegal to discriminate against a person because of their HIV status, while other people needed a place to feel safe and connected to others.

I knew people at the drop-in center who, too, felt uncomfortable and nervous about their disability outside their circle of friends. One major difference between them and me, AIDS leads to an early death, while mental illness often does not. However, debilitating depression and the risk of suicide is common to both.

After more than 10 years as a public health issue, AIDS still inspired fear in many people. Many were confused at best, hysterical at worst. The catch phrase often used in the AIDS community is silence = death. At the Alliance, there was a lot of talk, to lessen the fears and to educate. I learned from the clients and volunteers that a person with HIV or AIDS is not to be known as a "person suffering from AIDS," but a "person living with HIV/AIDS." That carefully worded phrase made all the difference, for it empowered individuals, and helped them focus on their lives. The Alliance had a Speaker’s Bureau, where individuals would talk to other agencies, schools and community groups to put a face on the disease and make people aware.

There were many people I came to know in the two years I spent at the agency. Some of the bravest souls I have ever met taught me much about the struggle for a good life, dignity and common decency. I grew to know many of the volunteers and members well. I came to know people who were dying and it made my complaints pale by comparison. With time, I felt comfortable enough to share my experience of mental illness with them and others. It was barely an issue; I was accepted fully for the valuable human being I was. In time, I came to learn about compassion, empathy, love, care, and concern for others’ well-being.

My friend Will (not his real name) came back to town in late 1992. When we met back in 1987, before any history of psychiatric illness on my part or any indication of HIV disease on his, we were working at the same business. We spent time together outside of work, with his friends and mine. It was a glorious summer. Later that year, the Buffalo office relocated to Miami, Florida. He chose to go, I chose to stay in my hometown. Our budding friendship was put on indefinite hold. I had nearly forgotten him, until the day he walked into the drop-in center. A double surprise, and a blow to my heart, a friend was returning to live back in Buffalo after Hurricane Andrew had destroyed all he had owned, and he was in the center to seek services. Will made no secret of the fact that he had been diagnosed with HIV disease, but it still affected me deeply. He was someone I had known before, in the late ‘80's, when we were both "healthy." I realized, as if for the first time, that health is a precious and precarious thing. It had a deeply sobering effect on me. Will soon joined the Alliance as a volunteer and a strong advocate for the cause of educating people and serving people with AIDS.

I learned about the value of work in a way no other previous paying job had ever given me. Staff meetings taught us all something about handling conflicts and working together. When I started, I did general office work; I answered phones, opened mail, typed forms, organized the files, used the photocopier, and greeted visitors. As the months went by, I found I could apply myself in new ways. I was one of the few people in the office who had some computer skills, and when a new computer was donated, I set it up and went to work. The agency was grant-funded, and incoming monies and costs had to be kept track of. That was when I started helping to manage the agency’s small annual budget. I often spoke with our agency’s program manager in Albany. I completed the application for the J.C. Penney Golden Rule Award, and our agency was chosen to receive this award. I was given responsibility. I accomplished things and was proud of my work. We all put our best effort into making the Alliance work.

It was an intense situation for all of us. We made it through somehow. Wednesday and Saturday nights were Supper Clubs, where volunteers would make dinner enough to feed two dozen or more people. People would come in and volunteer their time to teach the volunteers and members. We had group counseling, art therapy, yoga, meditation, country line dancing, and much more. The Alliance (staff, volunteers, members and friends) did what it could to raise money. We had a summer Pig Roast, we sold hot dogs at the Saint Patrick’s Day Parade, we held a Halloween Benefit Party, a fundraiser at an art gallery on World AIDS Day and much more.

Our work changed many lives and enriched the lives of people who were dying. However, it wasn’t a battle we would ultimately win. AIDS is a terrible and unforgiving disease. I attended too many funerals and memorial services. During my years of service to the Alliance, I knew many people who died from the ravages of the disease. There were counselors who were careful in explaining these situations to us. The confusion and the sadness were no less. I had lost people I knew; some were close friends. Each death of a friend took something from me and it also awakened me to the preciousness of life.

It became clearer to me how important the mission of the Alliance was. Helping others made a positive difference. There were people who found a home and a family in the members of the Alliance, because they were accepted without reservation. The agency often used the phrase "to live well despite our disability." I took this phrase to heart, and my own life was enriched. I was coming to terms with my mental illness. It was a very personal journey, yet I knew I was not alone. The unconditional love and support from friends helped me grow stronger in mind and spirit.