AIDS, Family, Faith: A Force for Change
by Richard B. Cory
October 28, 1998
Photo: Richard & Catherine Cory with their son Alex. UMNS photo courtesy of the Cory family.
Last year, I wrote "Life with Alex" for World AIDS Day. When our son Alex was born in 1986, naturally we knew that having our first child would ultimately lead to changes. However the changes over the past twelve years have taken on a different form than we ever imagined.
Because Cathie had complications in childbirth, doctors performed a C-section. Then she had extensive post-operative bleeding. In all, she received 22 units of blood plus several units of plasma, enough to replace the average human circulatory system twice.
During those days in the hospital, all I could think about was my little baby boy, who was in the neonatal intensive care unit because he wasn't breathing well, and my wife, who was in a coma. Cathie was unconscious for a couple of days. I saw my life falling apart around me. There couldn't possibly be anything worse that could happen.
As Cathie gained strength and Alex no longer was in intensive care, life returned to normal. When our son was almost two, the American Red Cross held a blood drive. Since Cathie
had received such a large blood transfusion herself, she wanted to give back the gift of life she had received. A couple of weeks later, however, the Red Cross asked her to return to their offices. She was told that she had tested positive for the HIV antibodies..
When they found out that she had breast-fed Alex, they urged us to have Alex, as well as myself, tested for HIV. I tested negative, but our worst fears had come true-- Alex was also HIV positive..
The Path to Change
When we first learned that Cathie and Alex were HIV positive, many concerns zoomed through our minds. A real fear was that there would be a premature death for both Cathie and Alex.. We were also concerned about the stigma associated with AIDS:
- How could we tell people?
- Would they understand?
- Would they shun us or be hateful?
- How could we possibly deal with the ignorance, bigotry, and hate?
- Alex was thrown out of a day care center when it became known he was HIV+..
- Later, he was refused admission to a church run pre-school.
- The following year he was refused admission to parochial school.
As we learned to live with the problems ourselves, I couldn't help believing that we weren't alone. Surely others had faced these problems.
I decided that we must find a way to deal with these problems in a pro-active and positive way. I decided to become a force for change.
A Force for Change
It was an easy thing to say that I was going to promote change, but not such an easy thing to do..
- How could I change the attitudes of people?
- How could any of us end hatred and bigotry towards others?
I decided to promote change through education. Even if I was able to influence only a handful of people, the world would be a better place. So I set out to learn as much as I could about AIDS. Not just about the medical problems, but also about the psychological and social problems associated with this disease. HIV infection is so much more than just AIDS. Finally I took a big step and became a Red Cross Certified HIV/AIDS Instructor.
I hoped to achieve several different goals.The first thing that I hoped to achieve was to be a force for changing the behavior of people. The spread of HIV/AIDS could be stopped if people would simply change those behaviors that put them at risk. I say simply, but I know that it is anything but simple.
Changing peoples' behaviors and attitudes is very difficult. If people don't learn the facts, they surely won't change. In this case, ignorance is not bliss; ignorance could mean death. The best I could do was to present the facts and hope that someone was listening and learning something that could save his or her life. If through my efforts I have convinced just one person to change their behavior, then I have been successful. What price could be placed on even one life?
My second goal was to be a force for change in peoples' attitudes. At least some of the people I addressed were not involved in high risk behavior. Many didn't see why this should be a concern to them. To them, AIDS was a disease that afflicted "those people" not "us."
By telling my family's story many people could see that AIDS is not a disease that affects one social or economic group. It affects anyone. It was clearly in their best interest to support AIDS research and education. Even if they didn't need to change their own behavior, changing the behavior of others could still save their life.
When my wife received the blood transfusion, she got blood from over 100 donors because her transfusion included blood clotting factors. A single unit of clotting factors requires multiple donors. All that was required for Cathie to become infected was for one of those donors to have been infected with HIV recently enough that the antibody was not detectable in their blood. If that one person had changed their behavior, my wife and son would not be infected with HIV today.
Another attitude that I hoped to change was the attitude of judgement and hate that is still present even today. On several occasions I have had people tell me that if my wife and son were infected with HIV they obviously deserved it. It was somehow a punishment.
Even when people weren't so direct, there have been those that were unintentionally hurtful because they withdrew. They were afraid. Some parents didn't want their children to play with my child. How could I explain to my son that people saw him as a walking death threat? I had to make an effort to show people that my family did not present a threat to them.
Perhaps of even greater importance, people needed to learn that people with AIDS are human. They hurt, they cry, they need love, caring, and nurturing at least as much as anyone else, perhaps even more.
Even today many people infected with HIV feel they have to keep it a big secret. They fear that if they tell anyone that they may lose their job, their friends, their family, and even the support of their church. At a time when they most need the support of their immediate family as well as their extended families, they feel paralyzed and hopeless to ask for that support they so desperately need.
Last, but certainly not least, I hope that by sharing the story of my family that those living with HIV/AIDS may find some hope. While I've spoken above of many problems that we have faced, for every person that has in some way caused my family grief, there have been many others who have shown their support.
Our story includes a story of faith as well. Despite the problems we have faced, or perhaps even because of the problems we have had to overcome, I have had my faith restored after a lengthy absence from church.
The Avenues for Change
After being a Red Cross instructor for a while I also became a member of the speaker's bureau of the Tidewater AIDS Crisis Task force which gave me some additional opportunities to speak. At first, I told my family's story only at small group gatherings (at PTA meetings, churches, civic organizations, etc.). Finally in November of 1994 we were asked to share our story in a newspaper article. That was the beginning of our very public campaign. We've since been in the newspaper several more times, on the radio live, and on television both live and recorded.
Of course there's one other very important media I left out, the World Wide Web. Though the responses we have received from our public appearances have been very positive, nothing can match the number and variety of the responses that I have received concerning our stories on these web pages of the General Board of Global Ministries, United Methodist Church. Over the last year, I have been contacted by people in our local community and across the United States. I've also heard from people across the world. There have been notes from people in Panama, Germany, England, Italy, Columbia, Indonesia, and Malaysia. People responding have ranged from youth in their early teens to people enjoying their retirement.
In a few cases, the notes that I have received have led to an ongoing dialogue and growing friendships with people that I have never met in person, and yet, they are an important part of my family. I've said how much I've tried to bring about change, but in reality, I can't help but feel that I've gotten so much more out of sharing my family's story than what I have given. I am so thankful for all of those people who have offered their support for me as well as those who have felt free to open their hearts and share their own concerns and needs with me.
This is truly a global ministry which has brought me many blessings and caused my faith in both mankind and God to grow. When we first decided to go public with our story we were a little frightened. Now I can't imagine what our lives would be like if we hadn't gone public.
It's Your Choice
any people think that it is unnecessary to show concern about HIV/AIDS anymore because the medicines have improved so much that AIDS is a chronically manageable disease. As I pointed out above, Alex has certainly had a remarkable turn around in his condition. But I haven't told the whole story yet. In achieving this wonderful improvement in his immune system, Alex has had to pay a great price. Though a person with AIDS is likely to live much longer today than they would have 10 years ago, there still is no cure and people are dying from AIDS related illnesses every day.
Aside from the fact that the medicines are very expensive, there is an even greater price to pay. Alex has been hospitalized 5 times. Only one of these was the result of an AIDS related illness. The other 4 were the results of side effects from the medications. He's been hospitalized for pancreatitis, twice for kidney stones, and spent time in the hospital suffering from diabetes and ultimately became an insulin dependent diabetic until his medications were changed.
The press tends to make a big deal out of reports that certain medications have dropped the viral load below the detection limit suggesting patients have been cured. Some medications can reduce the viral load to less than detectable levels, but "less-than-detectable" does not mean there is no virus. The virus also can hide out in various places in the body, including some brain cells, the thymus, and the lymph nodes.
As a Christian, I believe that we are all called to be a part of the force for change. We are compelled by our faith to change the world for the better. There is a solution to the AIDS pandemic. If people around the world join together they can become the greatest force ever known and change the course of history. If not, millions more people are destined to die needlessly..
The choice is yours. Be a part of the problem, or become a force for change.
Richard B. Cory Chesapeake, VA, October 28, 1998
About My Family
Cathie just started taking antiviral medications in October of this year. It has been almost 13 years since Alex was born. Until just recently Cathie has been completely asymptomatic. Though it is disappointing that she is having to begin therapy now due to rising viral load values and dropping CD4 counts. Even with these problems, she has still not progressed to a diagnosis of AIDS.
She has been amazingly positive and active. Between the business she runs from the house, the Cub Scouts, PTA, Civic League, and church activities, she scarcely has a moment to relax.
Several years ago, Alex's CD4 T-lymphocyte count dropped below 100 finally bottoming out at around 15. A normal value would be around 1000. When this happened Alex's doctors told us we should never expect to see his CD4 count above double digits again. During the past year, while taking a variety of medications, Alex's CD4 count has risen well above 500! While this number is still a little low, just a couple of years ago it was not thought possible that his drop in CD4 count could ever be reversed.