The Journey Begins

“Home is not a place; it is an attitude. It is an attitude which depends on how much we are able to feel at home with ourselves as well as with others. Home is something which happens to a person; homecoming has less to do with geography than it has to do with a sense of personal integrity or inner wholeness.

The most important of all endeavors in life is to come home. The most terrifying of fears is loneliness. It means that one has become a stranger to himself, and consequently, to others. To be lonely is to feel fear, to be forever unsettled, never at rest, in need of more reassurance than life can give.

Someone truly loves us when he brings us home; when he makes us comfortable with ourselves, when he takes from us the strangeness we feel at being who we are. We are loved when we no longer are frightened with ourselves.”

This story is about my most important endeavor in life. To experience that greatest love of all; to truly love myself, to shed the strangeness I feel at being who I am and to no longer be frightened with myself. This is my attempt to finally get myself home before I die. Much of the strangeness and the fear I’ve felt has been the result of the beliefs, words and actions of the people around me. Naturally, the most important and influential of those has been my family. I’ve never really felt at home with them because I’ve always been a stranger to them. Now, I think I understand why and that there was never any malice intended. But the hurt and pain have been real. They need to understand that, and how it has affected my life. They also need to know that that understanding is my only motive; because if they understand me and my life, maybe they’ll finally love me enough to bring me home.

Looking back at it; the most important thing that led me to finally take the HIV Test was that I was not afraid, and was actually ready, to face death. I simply wanted to know for sure so that I could begin to settle my affairs and be in control when it came. “Magic” Johnson has said that if he died tomorrow, he would have no regrets because he’s had the greatest life he could ever have imagined. I felt that I had also reached a point where I would have no regrets either, but for opposite reasons. In fact, it seemed it would be more of a welcome relief. My life has been disappointing; it hasn’t been all that happy, hasn’t made any worthwhile contribution, hasn’t changed anything, hasn’t made life easier or better for anyone and nothing I’ve done in my life has seemed to have had any meaning to anyone but me. That may or may not be true, but what’s important now is that that is how I truly felt as I approached the test.

On Thursday (10/3/91), I got the results from my first and only HIV test. In preparation, I had told myself that it was a 50-50 proposition with an equal number of reasons whit it could be positive or negative. It was positive. I was, and at the same time was not, surprised. I was not surprised because gay men are still the most at risk and because for the last two years I’d had swollen glands (lymph nodes) that I couldn’t explain. On the other hand, I was surprised because I didn’t think I fit my perception of the profile of the gay men who are most at risk. I had been “out” since 1978, at least out enough to have discovered that I was not alone and where to go to be with my own kind. True, in those early days of my new found freedom in the bars there were instances when I had been somewhat care free about who and what I did. But that was before AIDS came along and I was always primarily interested in pursuing a monogamous relationship and never considered myself to be a slut. I had never been the type to go home with someone new every night I went out or to participate in kinky or group sexual scenes. I never thought that my behavior had been risky enough that it would happen to me. And even though my glands were quite noticeably swollen, they weren’t painful or causing any problems and I felt as healthy as I’d ever felt.

“The Bar”
Come to the BadLands,
Haven for those who differ.
Step thru the door into a world
Aglow with fascinating intricacies.
Where facades are thrown off,
And the flight to freedom begins.
Drown the tenseness of a secret life,
In the sweet elixir of same-ness.
Wallow in the warmth of acceptance,
Shed your fears of rejection.
Live these hours to their fullest,
Let not the outside world interfere.
Be sustained by the smiles,
Tainted smiles that, out the door,
Fade into secretive defense.
Until the next flight...
M.W.C. - 2/78

Since then; I’ve discovered a lot about this disease and about myself, and I continue to be both surprised and not surprised at the way both are perceived. For myself, I have discovered that this is not an automatic death sentence and that I still may have enough time to accomplish something with my life. There are still things I’d like to do and, for once in my life, I’m going to do what I think is right for me and not what my family thinks I should do because they need to be spared any embarrassment from my actions. At this point, knowing my HIV status makes me feel empowered, optimistic, not afraid and ready to live the best I can for as long as I can. I want to start by sharing the things I’ve experienced and learned, the myths and misconceptions I’ve encountered in the hopes that others may benefit from it. If I can help just one other person get through this by dispelling some of the misconceptions that I myself had and preventing them from making the same mistakes, I will have accomplished something worthwhile that I can be proud to leave as my legacy.

I begin here with my biggest mistake and one of the most important and difficult lessons. At the time I got my test results I had been working at Perkins Restaurant for about three months. The dining room manager, Ms. Jimmi Coulson, had come on board a month after me and in the two months that we worked together I had established a good rapport with her and thought that we were friends. She knew that I was gay and had no problem with that, in fact she had confided in me that she had relatives who also were and that she understood. At the same time I became aware of and was dealing with my HIV status, her husband had been in a serious accident and she was also going through a personal trauma. Four days after I learned I was HIV positive, we were standing in the lobby chatting as she was preparing to leave for the day and go to the hospital to see her husband. I felt very empathic to what she was going through and as I hugged her good-bye I told her I understood, that we all had crises to contend with and that things would work out and we’d all be okay. She asked me what was wrong with me and I told her that I had tested positive for the AIDS virus. She was my friend, she had said she understood the difficulties of being gay and I didn’t hesitate to tell her. She hugged me again, said something comforting and then told me not to tell anyone else in the store about it. I replied that I had told Ron C. (another gay waiter), but that it was okay because he understood, would be supportive and someone that I could talk to about it. She again admonished me not to tell anyone else; we said good-bye and she left.

I worked my shift, actually I worked a double because we were short-handed, and then went home. I had the next two days off and in that time I can remember feeling good about having confided in her about my HIV status. Even though I did not yet know all the details or ramifications of my infection, it made sense to me that someone at work should know. What it I had an accident and was bleeding, or came down with one of the opportunistic illnesses associated with AIDS. There should be someone who would know to take precautions and I could be candid with about any sickness. So even though I was unsure about my future in some ways, I felt secure about my job and my ability to financially support myself through it. And with that mind set I showed up two days later, exactly one week from when I learned my test results, ready to go to work.

When I walked in the door, Jimmi was waiting for me and said she needed to talk to me. She ushered me into a closed dining room and introduced me to Peter Arevalo, one of the vice-presidents of the corporation that owns the Perkins’ franchise in the Greater Cincinnati area. She apologized for betraying my confidence and said she felt that it was the only thing she could do to help me. They said that the restaurant business was very stressful and that stress was the last thing I needed now. I countered that even though I was unsure about my future and what I needed to do next, I could handle that normal stress as long as I could work and be able to support myself. I told them that at this point there was just a series of blood tests and a physical that I needed to undergo, but I felt fine and wasn’t sick in any way. They persisted in their claim that the best thing for me would be to get out of the restaurant away from the stress, to begin the tests and take care of myself. Then they said that they were willing to help me so that it would be possible financially. At that point I realized that I was about to lose my job, one way or another, because they were afraid of me working in the restaurant. They wanted me to sign a termination form that stated I was voluntarily quitting due to personal problems. In return, they would give me a check toward my medical expenses and would support my claim for unemployment benefits. And, of course, I was asked not to discuss this matter with anyone else. The dollar amount that had been tossed out at that point was $1000.00. Since I had already figured out that I was going to be without a job, I now knew that I had to either take what they were offering and leave with some resources in my pocket or refuse their offer and wait a day or two for them to come up with some reason to fire me. And since they had all the paperwork on the table, it was also apparent to me that they wanted an answer right then.

My mind was spinning, weighing all the options. I told them that I understood the nature of the business and their fears, that they really didn’t have to do this and could probably get away with just letting me go and that I appreciated their concern. I asked them to reiterate what they would do and what I needed to do to accept. Mr. Arevalo did and I agreed to sign the termination form and take the money. He offered to put the unemployment agreement on a company letterhead and send it to me or to write it out now on a plain piece of paper. I said I’d rather leave with it in my hand and he wrote it out while I signed the form. As he began to make out the check, they again told me that this was the best thing for all concerned, that it would enable me to get the medical attention I needed and that they appreciated my cooperation. He then handed me the check and said that since none of us really knew what I needed or what it would cost, he had made it out for a little more. When I looked at it, my head began to spin again and I turned numb. It was for $1,500.00. I thanked him, stood up, shook his hand and turned to leave. Jimmi walked me out, told the supervisor I wouldn’t be on the floor that night, reminded me not to tell anybody anything and said that she’d stay in touch to see how I was doing. She asked if I was okay and could I get home allright? I had walked in to work because I was out of cash and said I’d be okay walking back home. She gave me $20.00 out of her purse, told me to take a cab, gave me a hug, said good-bye and I left. I went and got some cigarettes and decided to go ahead and walk back home so I could think. As I proceeded, the thought came to me that they could change their mind and stop payment on that check. So when I got to my bank I deposited it through the ATM. In retrospect, I should have waited and made a copy of it first, but I wanted it to clear before they had a chance to change their mind.

The next night I got a call from Ron C., the other gay waiter whom I had told about my test results. I wasn’t home but there was a frantic message on my machine that when he had gone to work that night, Jimmi had left word for him that he was fired. He wanted to know what was going on. I met with him the next night and told him what they had done with me. We both came to the conclusion that their fears of an “AIDS scare” in the restaurant had prompted them to fire him because he knew of my test results, we were friends, I’d probably tell him about their deal and he might let it slip to someone else in the store. They wanted to remove that risk and just fired him. Unfortunately, it turned out that he had also tested positive and didn’t go as quietly and cooperatively as I did. He began to fight back and one of the ways he did was to start spreading the whole story through the gay community. That’s another factor that motivated me to tell my story, because people have asked me about what happened and what I was going to do about it. The most important reason, though, is to prevent someone else from making the same mistake by pointing out the necessity to be extremely careful about to whom and how one reveals their test results.

About a month later I went to the AIDS Treatment Center at Holmes Hospital to have the blood tests, a physical and get signed up for the clinical trials program. The staff at the ATC were very understanding and supportive and the first to clue me into the fact that Perkins had screwed me over. My T-Cell count was pretty good at about 650 and I was, indeed, in good health and able to lead a relatively normal life.

“Can an employee with HIV be fired or transferred because he or she carries the virus?
NO! In the workplace, AIDS and AIDS-related conditions are legally seen as disabilities. It is against the law to discriminate against a person because of a disability. If the person with HIV can do his or her job, then there is no reason for a change. People with HIV may be able to work for many years, and should be allowed to continue in their jobs. Unfortunately, some companies may not be aware of handicap laws, or just do not follow them.”
Ohio Department of Health Brochure

If I’d had this important piece of information when I got my test results and before I was confronted by the management at Perkins, the situation would have turned out quite differently. I may still have my job, my health and my sanity. But I didn’t have it, they knew it and took advantage of that to get me to sign the voluntary termination form which put them in the clear when I filed a complaint with the State of Kentucky. As it says above, some companies just do not follow the laws, especially when they think they can get away with it!

Since I’d already lost my job, which was the only thing of value that I had feared to lose, I became quite candid in discussing my situation with people I felt were interested and would be supportive. That included friends, family, doctors, lawyers, AVOC counselors and community leaders. Through this, as I mentioned before, I’ve discovered a lot about the myths and misconceptions about this disease. And again, while I was not surprised by those of the straight community, I was most surprised by those of the gay community. Most people believe that (Full-blown)AIDS = Death and, tragically, that is usually true. A great many also believe, as I once did, that being HIV positive = AIDS (which in turn = Death). That is simply not true, there is a big difference between the two. To understand this, consider the T-Cell Count which is a primary indicator of health in HIV infection. A normal, healthy count falls in the range of 900-1200, while a count of 250 or less is the norm when a person becomes sick, is diagnosed with AIDS and eventually dies. That leaves a range of about 250-900 where a person is below normal yet still healthy. The accumulated research now shows that being HIV positive is a condition similar to Diabetes and, as such, is classified as a Chronic, Controllable disease. The key to being controllable, however, is Early Detection and Intervention. And that, my friends, is the single most important reason why everyone should take the HIV test. Especially anyone who has ever engaged in what is now considered unsafe sex, even if it was years ago or not very often. This virus has been around a lot longer than we think and it only takes one contact to get it. Look at this as being as important as voting, if not more so, and apply the same slogan; “There’s no good excuse!”

And speaking of excuses, I’ve probably heard them all and even used a couple myself at this point. They include, but are not limited to, the following:

However, many of these excuses are grounded in the myths and misconceptions about HIV and AIDS that many people still believe. If they would learn the truth, they would realize that there are things that can be done and much more to be gained than lost.

The Michael W. Connett Living Trust

“On Coming Home”