Living in the Shadows of Life: Those who Live with HIV/AIDS in Northern Michigan Struggle with Loneliness, Despair and the Need for Secrecy

Aug. 7, 2002

Dear Readers,
The following essays are by people throughout Northern Michigan who suffer from AIDS and HIV. They include a mother, a gay pastor, a recovering drug addict and others for whom AIDS and HIV are often “a secret well kept“ from friends and even family.
All of the writers are anonymous for a reason: fear of rejection. The essays are courtesy of the Wellness Network, HIV/AIDS based in Traverse City. August is HIV Awareness Month.

Northern Whispers

“Did you see that guy? He‘s the one I was telling you about.“ The turned heads speak in quiet voices.
The whispers are something those with AlDS must face daily. Living in Northern Michigan in a small town can be an isolated existence. Having AIDS is not a subject that you would want spread around. Yet that fear becomes very real when YOU are that person who has AIDS. Who can you trust? What happens when they find out? Where do you go for help? The acceptance issue I had to face was in itself staggering. The challenges seemed almost to much to bear. I suppose they are no different than when someone is told they are going to die. The one unmistakable undeniable truth, death is imminent.
Anyone who has a chronic ailment will testify how important health care coverage is to your life. More specifically, prescription drug coverage can make or break you in a flash. For example, my drug regimen costs $3,460 each month. Thank God I have an excellent drug plan. Imagine life without Insurance and having AIDS? Where would you be in this situation? Most people think AIDS is a deadly disease that will never affect them. How off the mark that line of thinking is. I was one of those people. I worked, paid my bills, even went to church. I thought iife was pretty sweet. I managed to live in a beautiful area that most people desire.
November 19, 1999, at the peak of deer season I went to the walk-in clinic to get something for a nagging cough. A few days later, sitting in the doctor‘s office I heard the words “you‘re HIV POS.“ Life has never been the same. The shock from hearing those words still rings clear today. Life has become of series of blood tests for things I never thought were important. T-cells, CD-4, and enzymes of every sort I‘d never heard before. Some numbers were high, others low. None of it made sense other than the fact that I was faced with a very real new episode in my iife.
Now, almost three years later, The doctor appointments are “almost routine.“ I had to become educated on this disease in a hurry. There is always something on the horizon or pending approval that brings a ray of hope. The healthcare industry alone has immensely improved the lives of many people with AIDS. There are still miles to go. Maybe because the deaths from AIDS have dropped off, many people think it‘s not such a problem anymore. In Michigan alone there are almost 16,000 people that have been diagnosed with this killer disease. This number does not even include the countless thousands that are infected and don‘t know it.
The pharmaceutical companies have made enormous strides in creating new medications. Yet the things you may not hear are how very toxic and taxing these “life saving“ medications are to tolerate. Fatigue, diarrhea, nausea, vomiting, headaches, weight loss, loss of appetite are very real every day -- “manageable“ side effects that I am expected to endure. The truth is these life saving drugs are the only thing available at this time. I make the best of a dire situation and plan my existence around these new challenges. Having AIDS does not give me any special privileges In society. I‘m not here to solicit anything other than public awareness to this disease. All I can say is think before you act the next time you consider having unprotected sex. You don‘t want to be another statistic.

A mother rides the AIDS carrousel

PULL QUOTE: “My husband and baby had to be tested for HIV.“

My stomach expelled it‘s contents only to stop in the middle of my throat while the words of “you‘d better get yourself checked“ slammed against me like a brick wall.
My mind spun from one nightmare to another... a body filled with poison blood... a venomous outcast in society... a labeling... sickness... medications... bills... fears... an early death...
Then suddenly, the carrousel stopped. “My God‘ oh dear Lord, my baby!“ My thoughts became one now, centered and locked on the health of my child, my innocent, precious little boy.
I spent the afternoon at home, an isolation that became solitude while my baby slept. Constant tears of anguish accompanied by involuntary wails could not break into the paralyzed state my mind had seized for comfort.
The strength I needed for rationalizing my next course, scheduling my HIV testing, came that evening from my spouse‘s love and support.
The worst day of my life came with a ‘positive“ reading from my HIV testing of December 3, 1996. Once again, the carrousel started its spin.
Immediately, I needed to stop breastfeeding my son, a cruel denial forced upon our special bond. His refusal of a bottle weakened my strength of better judgment; I gave into his cries and nursed him two more times, the surrender a sweet sorrow. Three days, seeming an eternity, had passed and success at bottle-feeding was achieved, the first victory in many tribulations to come.
Unquestionably, my husband and baby had to be tested for HIV. My hopes for a negative reading impelled my consistent prayers; I bargained if any redemption was left for my soul, I would promptly release it to assure my husband‘s and son‘s freedom from this viral genocide.
My husband was tested first. Lingering anticipations stifled us both as we waited for the results, which came back negative. In gratitude and faith, I continued my prayers.
Due to my son‘s age, the initial testing was prolonged for nine months, an enduring sentence that had been placed on my daily sanity. Upon the day, heartbreak flooded my body as I listened to the cries of my little angel while my husband held him for comfort. Numerous tubes of blood, that seemed to empty his veins, were expelled from his delicate arm. I hated myself.
On September 28, 2000, my prayers again were answered by my son‘s “negative“ results. Heaven‘s graces showered down once again, I am truly blessed.
Since my diagnosis, I‘ve experienced unbearable rashes, consistent diarrhea and five months of hell before the carrousel stopped with my body‘s acceptance of my current medications, seven pills taken twice daily.
For one year now, the HIV virus in my body has been undetectable, truly a blessing. The carrousel has stopped its spin for now.
A few family members know my condition; apprehension keeps me from telling the others. As for my parents, I wish to keep this knowledge from them at this stage in their lives, another hardship may crush them.
For those of you reading this, I keep my identity a secret. You could be my neighbor, employer, co-worker or friend who may feel threatened and impose judgment for not “who I am“ but “what I have...“


A secret well kept

PULL QUOTE: “One of the hardest paradoxes I face is going weekly to my family church.“

I live in Northern Michigan and I have HIV. I am healthy, happy, active and outgoing. Many of you deal with me every dav in a positive and caring way. To most of you I am the picture of good health in every way but for the HIV infection, I am. I am taking my HIV medication religiously and have been feeling fine since starting the medication. I am an active participant in my community, my church, and local organizations. Many people rely upon me for advice and I work with all types of people from Northern Michigan.
So why is my HIV such a big secret? If some people found out about my HIV infection, I would either lose my job or it would be made so difficult that I would have to quit; the friendships that I have would dwindle to a supporting few (that may not be so terrible); and I would be considered a leper in the community in which I have lived.
One of the hardest paradoxes I face is going weekly to my family church. The message there is of love and help in supposedly the Christian perspective. But I strongly feel that if the church knew I had HIV and was gay that not only would I be not welcomed, but I would be kicked out of the church and forced to “recant“ my gayness in front to the church where they would then decide to either burn me at the stake or welcome back as a former sinner. I do not understand how an organization that is supposedly committed to helping people and showing mercy unto others can be so narrow and mean.
Magic Johnson is my hero in this struggle. He has lived well, held his head high, and continued to live his life fully while maintaining his health. Recently he celebrated his 10th anniversary of living well with HIV. I expect to do that as well and hope and pray that a cure for HIV will be found by that time.

Christians need to be helping

PULL QUOTE: “Later I discovered that the pastor had been very concerned about whether the congregation would accept me“

While I have personally found the medical and professional social care for those with HIV/AIDS in Northern Michigan to be superior to that in both the state and national capitals, Lansing and Washington (where I have also lived), I have been disappointed by the lack of community response to an issue that is of such growing impact all around the world. And, as a retired pastor, I have been particularly disappointed in our area churches.
Over the years I have witnessed the increasing differences between the Gospel of Jesus Christ and the Church that claims to follow it. I saw it in the two decades I wasn‘t a church-goer, but also in those years that I was regularly in the pews, and even more so later when I was ordained and preaching from the pulpit and pastoring a congregation.
The Gospel is about “love,“ but the Church teaches “sin.“ The Gospel is about loving and caring for the least, the last, and the lost, but most churches seem to be little more than country clubs or potluck groups. The congregations gather weekly for their own edification, but pay little attention to those in the community who are suffering and in need — and especially to those whose problems are made even more difficult because the community turns its back on them.
When I was living downstate, I was first attracted to the church I attended because of its policy of welcoming gays and lesbians and those affected by AIDS. I continued to attend because I found that it wasn‘t an empty policy statement but a reflection of the congregation and its understanding of the Gospel. I attended because the pastor and the congregation truly cared about all of God‘s people rather than just the “I, me, mine“ of today‘s culture. I felt among people who didn‘t want to be just another country club or potluck group, but who truly wanted to be disciples of Jesus Christ.
After having been active for some months, having taught classes and preached, the pastor asked me to officiate at a Sunday morning communion service. I love gathering with other worshipers at the communion table and readily agreed to serve in his absence. And it was a wonderful service — one of those rare times when I didn‘t feel too busy “running the show“ to feel the Spirit present. It wasn‘t until sometime later that I discovered that the pastor had been very concerned about whether or not the congregation would accept me and was very nervous about whether the table would be prepared and whether or not the congregation would take communion from a pastor who was known to be gay and have AIDS. Personally, I was so comfortable there, so sure that the congregation was indeed Christian, that it had never even occurred to me that there might be a problem. On that occasion I received Christ through the ministry of the congregation. Unfortunately, I haven‘t found a church of any denomination to replace it since moving up here to Northern Michigan.
Most of those with HIV/AIDS have a number of problems besides the many health issues. One of those is that they are rejected by their own communities and sometimes their own families. All people, but especially those who profess to be Christian, should be helping them with food, rides to the doctor, financially, etc., but most of all by recognizing them as children of God.

Living alone, with AIDS

PULL QUOTE: “My partner of 8 years decided he could no longer take it.“

Most of my life I‘ve shown and trained horses. Training horses was a great passion of mine, a dream come true.
In 1994, At the age of 30 that all came to a screeching halt, when that spring, I found out I had AIDS. At first I foolishly thought it might be something, that with the
help of my partner, my family, and my friends, I could handle it with some degree of ease. When it was time to tell my friends and even some of my own family members, most of them decided I was no longer fit to be around, because they have that same old idea that HIV/AIDS can be contracted by just being around me.
A few years ago, I got very sick (again). I found out I have P.M.L. (progressive multifocal lukoensepholopothy). I found myself in a wheelchair and I had double vision. My partner of 8 years decided he could no longer take it. So I‘m now
without him to help me through all the frustration of living with AIDS. I now know what it must be like to have landed here from another planet.
I guess I could consider myself lucky. I‘ve seen so many of my friends live and die with AIDS. Alone and scared to death. Their own family and friends seeming
to think it is okay to forsake them, which probably only hurried their deaths. I know what it is like to live alone with AIDS, to be so scared that you don‘t know how you‘ll ever get through all the rejection, the anger, the loneliness, the pain of losing your loved ones and your friends.
If only people would realize that we who are living with HIV/AIDS are still the same people. We need the love and compassion of our friends and family, now nore than ever. This is not God‘s way of punishing gay men and women. If so, why did Ryan White die with aids at such a young age? Think about it.

My life was a total mess

PULL QUOTE: “I learned very quickly that it wasn‘t in my ‘best interest‘ to tell anyone about my disease.“

I am a drug addict. I have used and abused heroin, cocaine, uppers, downers, marijuana and alcohol. I have done terrible things to my body. And I have hurt those that I love, mainly because I was sick.
I spent 25 years of my life fighting drug addiction. Since then I have had to deal with the problems that most of us have been through our “growing up process,“ like learning how to be responsible. I didn‘t know how to budget money. I didn‘t know what it took to keep a job. I had a hard time with relationships, with being honest with myself, and with other people. I had no self-esteem and very little confidence in doing anything constructive. My life was a total mess.
By the grace of God, and with the help of a lot of dedicated, professional people and prayers and luck, I have overcome a lot of things that kept me from being a “normal person.“ I finally got to a point in my life where I felt comfortable with myself.
And then I was diagnosed with AIDS. I had done everything I was supposed to do. I had sought out God and made peace with those whom I had hurt. I had a good job, and I was a productive, law abiding citizen. I was determined to fight this disease. And I felt that since this happened to me, maybe I might even be able to help others.
What I didn‘t know, or understand, is the fear that people have of persons suffering from AIDS. I learned very quickly that it wasn‘t in my “best interest“ to tell anyone about my disease. I didn‘t want to lose my job, or some of the relationships that I now have, so I live in silence, afraid of being exposed, or worse, ostracized in my community. I can‘t help anyone. Or myself.
Somehow, some way, people need to understand what this disease is about. We need to help each other, educate each other. There are so very many of us living in the “shadows“ of life, depressed, and alone.
If you‘re reading this, then maybe it starts with you. Educate yourself about AIDS. Learn all you can about this terrible disease and its effect on people. Then tell somebody.