A Personal Story
Learning to Live and Love, All Over Again
I was asked to write a biography for a social group where I am a member. I chose instead to write or reveal a portion of my life because this is where I am now today. I can tell you about my work history, my politics, my beliefs, and many other things, but this is what I felt was most relevant and most important.
It was May 1, 1974. Joe and I meet at an Indianapolis bar called the Déjà Vu. We spent the next seven days together not knowing our lives would become as one for the next 29 years. There was a book title then, Seven Days in May, that was often referenced somewhat jokingly when we told people how and when we met and about our first week together. Those were the early days, the happy, carefree days. Joe and I dated by telephone and long distance for several months before moving in together in Washington, D.C. After two years, we relocated to Joe's home city, Indianapolis. That was 1977.
Our relationship was a whirlwind of activities, building lives and careers. We had fifth, seventh and tenth anniversary parties. But on Thanksgiving morning 1987, Joe's 16 year-old son, an only child, was killed in an automobile accident. My, how our lives changed. Talk about searching for answers, a raison d'être, well, there wasn't one. Joe's life, and therefore, my life, was turned upside down. Yes, there was grief therapy; there was this church and that church, counseling, every conceivable effort to put things back the way they were, but like Humpty Dumpty, the pieces just never seemed to go back together again. Afterwards, Joe's best friend died of AIDS, my best friend from my years in Washington died of AIDS, our parents, his and mine, died, but our lives continued and our relationship seemed strong. I thought that we had survived all of these tragedies and I thought to myself that we had become great role models.
Fast forward to 2002. We were not really role models at all. We were like everyone else, gay or straight. We were just wrapped up in our lives and somewhat oblivious to so many things. I went along with Joe who did not want to be tested for HIV because he did not want to know. He didn't want me to be tested either because he did not want to know that either. We had not kept up on the advances of treatment and only believed that, if diagnosed, we would die horrible, stigmatized deaths like so many of our friends. Even though we both suspected we had AIDS (we never considered being HIV-positive as that was just a synonym for AIDS), we convinced ourselves we were better off not knowing for sure. Why? Because, in our deepest fears, we knew the answer. We came out in a sexually charged era and we were sexually active and not monogamous. We believed AIDS was a death sentence and there was nothing one could do about it.
My story is not unique. I became very sick with one problem after another. I secretly sought an anonymous HIV test that came back inconclusive. Shingles, panic attacks, electrolytes severely depleted, thrush, coughing, shortness of breath, no sense of taste, exaggerated sense of smell, can't eat, can't drink, a "type" of pneumonia, weight loss, other problems and ailments with long names, trips to the emergency room, then hospitalization and another HIV test, and finally, reality on September 21, 2002. The test results are confirmed. Mr. Johnson, you have AIDS. My God, I almost felt relief at that point since I had already "known" the answer and I felt prepared. Little did I know that Joe also knew the answer and that he, too, was prepared. I asked my new and very brilliant infectious disease specialist to talk to Joe. He talked with him for at least an hour. I was in the hospital bed listening as Dr. Kaul explained to Joe how I would live a normal life span, if only I would strictly and faithfully adhere to the drug regimen he was going to put me on. As Dr. Kaul talked to Joe and explained things in such a compassionate way, I cried for the first time. I sensed such emotional relief. I believed that Joe and I would get help together.
Honestly, I never thought about dying. Everyone else subsequently told me they did not expect me to leave the hospital, but I did. I had to leave not because I was well, but because I had to attend Joe's funeral. The next morning, Joe took his own life. I can only rationalize he did not want to be left alone as I was his only relative and his "glue" that held his life together. He was so wrong in his assumption. Joe arranged for my brother, Bill, and his wife, Patti, to be in my hospital room when I learned Joe was dead. Yes, Joe had been well prepared for the diagnosis and he orchestrated quite a lengthy list of extraordinary events just hours before he died. These events will have to wait for another day (maybe a book).
Many, many things have happened to me since September 22, 2002. I buried a partner. I grieved. I began to see doctors. I have seen most of them, infectious disease specialists, otolaryngologists, internists, gastroenterologists, dermatologists, oncology/hematologists, orthopedic oncologists, neurologists. I have learned everything I possibly can about HIV/AIDS. Bill and Patti, my friends who know and my friends who do not have all been supportive. But, none of this meant nearly as much to me as what happened January 1, 2004. Thanks to my Rio Rancho, New Mexico friends, Bill and Tony, I was persuaded to cut short my Christmas visit with Bill and Patti in Tulsa, Oklahoma. They convinced me that I needed to come to New Mexico for a New Year's Day brunch. I said I couldn't. They said I could. They said we'll pay your way to fly from Tulsa to Albuquerque and back to Tulsa to resume your Christmas visit in a few days. I thought, no one ever made such a generous offer to me, and so I went.
A New Love
As fate would have it, at that brunch on January 1st, I met John, an extraordinary man. We clicked, but I had a secret. We spent all of that day and the next day together. There was a sad goodbye on the second. I went back to Tulsa. I called John a few days later from the airport in Chicago and we talked. We talked every day for the next month or so. I invited John out to Indianapolis for a visit. He agreed he would come. I was excited, but then I started to worry about whether to disclose or not disclose my HIV/AIDS status. I worried myself sick. I was not prepared for disappointment or rejection. I talked to Bill and Tony. I finally decided that I must disclose so I sent John an e-mail saying don't book your flight to Indianapolis until we can talk. John went to a conference room where he worked and we talked on the phone. I reluctantly told John that I was HIV-positive. John said, but what do we need to talk about that is so important. I asked, did you hear what I said? I am HIV-positive, in fact, I have AIDS. John simply said he assumed everyone in the gay community probably was and that he was well-educated about the virus and how it is and is not spread. He said it is a non-issue. He was in no way judgmental. I was flabbergasted, but relieved that he was totally understanding. We have talked every day since that fearful day. After many trips back and forth between Albuquerque and Indianapolis, John and I decided it was time to go to the next step.
A New Life
As fate would have it again, everything just fell into place. In May, John completed a degree he was working toward and gave notice at his employer he was resigning. Concurrently, he started to get his Nob Hill (Albuquerque) home ready for sale, but it never made it to market. While building an entrance garden arbor for his home, an acquaintance stopped by and said I heard you might be selling your house. John said I haven't listed it because it will take two or three months to get the house ready to sell. Bob, the acquaintance, said I want to buy the house now. Paul and I will come by on the weekend to finalize an agreement if that's okay. John thought he might be kidding, but the deal closed 10 days later and, as a bonus, John got to stay in the house, at no cost, through June.
I flew out in June, we finished an irrigation system and some landscaping, packed a Budget Truck and drove the 1,300 or so miles from Albuquerque to Indianapolis. After driving for four days, we pulled into our home in Indianapolis to balloons on the mailbox compliments of our friends and neighbors, Chuck and Ken. A group of friends unpacked the truck, returned the truck to Budget, and all of us sat down for dinner at the Tuscany Grill restaurant.
John and I are a "magnetic couple" or "discordant couple," meaning that I am HIV-positive and he is HIV-negative. The disease is a fact, but it does not define either of us; yet I am now a very serious activist in the HIV/AIDS community. I am on the Client Service Committee at the Damien Center; I have visited other AIDS service organizations (ASOs) and plan to visit as many as possible. John joins me at a dinner function twice a month where HIV infected and affected people socialize with absolutely no stigma, but with a strong mutual understanding and respect for what brought us together and where we've been in the history and process of this disease.
HIV/AIDS is still incurable. It is sometimes manageable through a combination of toxic and near-toxic medications that are lifesaving. Sometimes one wonders whether the side effects from the drugs are worse than the disease; however, being realistic, we know the drugs were fast-tracked by the FDA to save lives. For me, so far, so good.
Today I am 63 years old and I feel good most of the time. I am an advocate for prevention, testing, and medical treatment. Unfortunately, I was diagnosed late in the course of HIV disease so I struggle to get my CD4 (T-cells) into a normal range, but while immunologically compromised, I am virologically doing exceptionally well. My viral load has been undetectable since February 2003. I know much more than I ever thought I would about HIV/AIDS and HIV meds. I want to share my experience with anyone who may be struggling with concerns about HIV/AIDS. Anyone who can benefit from my experience needs to know that there is help available and they can talk about their questions, fears, and hopes in a safe environment. It took me a long time and a lot of money and heartache to understand that there is help regardless of your situation, station in life, or your financial means. When John came into my life, my life changed. John gave me a new inner strength, courage, honesty, and openness to face life's adversities. His love has been empowering and refreshing.
My mission now is to be more open (yes, there is some risk to that), and to get the message about HIV/AIDS out so that people know everything they possibly can about the disease so that they can obtain services. I serve on the newly formed Ryan White Planning Council for the Metropolitan Indianapolis Area. We are one of only five new Transitional Grant Areas (TGAs) with the responsibility for determining how our TGA allocates its Part A funding to each service category. A TGA is comprised of those cities and counties hit hardest by the HIV/AIDS epidemic. Planning Council duties include setting priorities and allocating funds for services based on the size and demographics of the HIV population and the needs of the population. Particular attention is given to those who know their HIV status but are not in care. Planning Councils are also required to develop a comprehensive plan for the provision of services that includes strategies for identifying HIV-positive persons not in care, and strategies for coordinating services to be funded with existing prevention and substance abuse treatment services.
The Ryan White Planning Council membership must reflect the local epidemic and include members who have specific expertise, such as health care planning, housing for the homeless, incarcerated populations, and substance abuse and mental health treatment, or who represent other Ryan White CARE Act and Federal programs. At least 33% of our members must be people living with HIV (PLWH) who are "unaffiliated" consumers of CARE Act services.
As a planning council, we identify and assess needs, set priorities and direct the grantee to issue Requests for Proposals (RFPs) so that the needs of the HIV/AIDS community are met. If one is insured, uninsured, or underinsured and believes they or someone they know needs HIV/AIDS services of any description, I would like to offer some guidance in knowing, from my own experience, what is available. In addition, I want to see that the Planning Council hears those needs and concerns as we decide on delivery of services. I assure you that anything I am told about any health matter will always remain confidential. Trust and confidentiality are essential to good communication.
Kim Johnson was the youngest of two boys who grew up in a small town in south Alabama. He graduated from Auburn University, attended Law School at the University of Alabama, and from the age of nine was involved in politics of some kind. Kim still dabbles in his executive recruiting firm in Indianapolis, which is in its 14th year. Hobbies continue to include politics, pets, and travel. Kim and his partner John live in a 150-year old remodeled barn house in Indianapolis. E-mail Kim at firstname.lastname@example.org