Shane Stanford is a teacher, speaker, author and pastor of Gulf Breeze United Methodist Church outside of Pensacola, Florida. He is the first HIV-positive pastor to be ordained in the Methodist church. A hemophiliac, he contracted HIV through a blood transfusion at age 16. Imagine an article from Shane, telling teens about illness–their own or a loved one’s.
Zondervan is releasing his book A Positive Life in March 2010. A Positive Life is his fifth book but the only one that tells his personal story of loss, long-term illness, discrimination, workaholicism, infidelity…His candor on life, suffering and the nature of loss is moving and profound. More than a memoir, this is a great book for anyone.
The following QA gives insight to the personal and ministerial issues of Stanford’s living with HIV.
Q: Shane, you were diagnosed with hemophilia as an infant, and today you are HIV-positive and dealing with Hepatitis C. Yet you pastor a very large church; you are married and have three biological children; you host a television show; and you’ve authored several books. Did you ever expect your life would look like this?
A: I’m not sure any of us expect our lives will turn out exactly as they do. However, I had dreams from the time I was a little boy about accomplishing certain things. First of all, I was not going to be a pastor. My undergraduate degree is in pre-law, and I thought I would be an attorney. In fact, even after serving a small student pastorate, I still thought I would finish college and go to law school; but God led me in a different direction.
Mostly though, my life changed the morning I woke up as a 16-year-old boy–who only the day before had been the president of the class, captain of the golf team and dating the prettiest girl in school–to being told on this day that I maybe had two to three years to live.
I accepted the news like anyone my age, I suppose, except that my family had already instilled a strong faith ethic in my life, and I had a lot of good people praying for me. I also had the support of that young, prettiest girl who decided to stick with me even after hearing the news of the diagnosis.
More than anything, my grandfather is the one who affected my life most from that point. I write in the book [about] how my grandfather posed a question to me: “What are you going to do with this thing?” He was a good, country man who didn’t talk about AIDS and such topics, and he certainly did not cry; but, on this day, he wanted to help me walk through the pain and grief. I told him I did not have a choice. He quickly replied, “We always have a choice.” I couldn’t see one. In fact, I felt that my choices had been taken away.
My grandfather cast the choice like this: You can get in the corner and have a pity party about the raw deal you have been given [and] he said he would even get in the corner with me if that is what I chose. But, he said he knew me and believed I would make another choice—one that would make the most of everyday and make life matter.
So, I would have to say that from that day I decided this disease may kill me, but it would not define me. As God opened one door, or when one struggle or another raised its ugly head, we simply tried to be faithful.
Now, I am not saying that if you live like me, you will be blessed and have all these wonderful things happen; but there is something powerful about drawing close to this God who loves you so and trusting that whatever may come your way, the two of you together can handle it.
Q: You were diagnosed with HIV (which you contracted via treatment for hemophilia) in the late 1980s as a teenager. What did the public know about HIV at that time? How has public perception of HIV/AIDS patients changed during the past 25 years?
A: At the time I learned of my HIV status, it was very dangerous physically and relationally to let anyone know. In fact, I remember my mother saying we could not tell anyone because we couldn’t be sure of how people would respond.
Most of this was because people didn’t know enough, but I remember young men [such as] Ryan White and Ricky Ray whose lives became very public because of the disease and because of the discrimination that surrounded it.
Of course, a lot has changed in terms of the perception of the disease itself. People are not as frightened of it. I remember being in the hospital in the early 1990s and having the orderlies leave my food outside on the hall floor because they were scared to bring it in. You don’t hear of a lot of that anymore.
Most of the discrimination and stigma remains socially. You don’t find a lot of people who are HIV-positive in positions of power or importance, unless they started there; and there are still a lot of people who judge the disease based on how the person contracted the disease.
So yes, we have made a lot of ground; but we still have a lot of work to go.
The vast majority of HIV-positive people are living lives just like everyone else, except they have to take a lot of medicines. It just so happens that my life is so public. It had to be that way, and I want to help it be that way for others.
Q: Your grandfather was especially influential in your young life. How did he respond to your HIV diagnosis, and how did it affect your future?
A: As I said earlier, if he had not asked that question on that hill that day, I never may have gotten my head on straight and known that each day was a gift no matter the situation. He taught me not only how to face that struggle; but through those early years, he taught me about strength and grace even when it was not being offered [in return]. He was a very good man.
Q: How did your high school sweetheart (and now wife), Pokey, respond to your diagnosis; and how did her response affect your future?
A: I was most scared of telling her because I had really fallen for her. The day I learned of my diagnosis, she was away at her dad’s visiting for the summer. So I had to wait until she got back to tell her. I created these scenarios as to what she would say, and none of them were good. I mean, why would a beautiful, smart, 16-year-old girl with everything to live for want to hook up with a guy who might die in two to three years?
Pokey has a remarkable spirit and view of the world. I also learned she had her own wounds–sexual abuse as a child, an eating disorder–that shaped how she saw the world. She certainly was not your typical 16-year-old girl.
She was incredible when I told her. She embraced me and told me she wanted to share some things about her life. We felt like two broken people whom God had brought together. We have been together ever since. We have had our difficulties, as I’m sure folks will learn in the book; but we are soulmates, and God would be most disappointed if we gave up on that gift.
Q: Your denomination’s leadership struggled with your HIV status when you applied for ordination, but you eventually were ordained as the first HIV-positive clergyman in the United Methodist Church. Did the discrimination and misunderstandings about your health end once you became a local pastor?
A: It did at one level but not necessarily at another. True, the denomination approved me, and I was ordained; but the first church to which I was appointed as pastor would not take me. So the leadership of the general church had worked through it, but it was still very raw for the local church. In fact, there was a lot of concern as to whether anyone would take me. Finally, my home church offered for me to work there as an associate pastor until we could find an appointment. After that, I founded a new church and was pastor there for almost 10 years before going to work for the bishop and eventually expanding my teaching ministry. Now, I pastor one of the 20 largest UMC churches in the country; but it certainly was not a given back then that I would even have a church to pastor.
The other way it all affected me, though, was emotionally; and I didn’t even realize how much. The whole idea of being rejected and knowing that everyone was watching and waiting to see if ordaining me was the right idea or worth it made me work extra hard and even push myself to unreasonable limits.
In hindsight, it was those patterns in my life that caused me to abandon Pokey emotionally and that led to the major source of our trouble during the awful years of our marriage. I felt like I had to prove so much to people to show their choice in me was very much worth it. Doesn’t seem like much now, but it dominated my thought patterns then.
Q: How can the church be a better support to those who struggle with chronic illness?
A: I’ll answer this one as a pastor first. It really depends on the illness. Medicines are great and people are living longer and healthier; but most of these meds have horrible side effects that can be as debilitating as the disease. There needs to be lots of conversation, honest conversation–among people who are chronically ill and those who live with them, [their] friends, the people they work with–so everyone understands the circumstances. Hiding this kind of info inside will lead only to confusion down the road.
The church can help by:
• Offering a place of peace and rest for these folks;
• Classes that help with basic issues of living healthy and well;
• Providing support groups;
• Providing community opportunities; but also
• Providing ways for the chronically ill person to serve.
Most folks who are chronically ill do better when they have a goal and a purpose. The church provides the best purposes in the world. There are other dynamics that will be helpful, too, including just building safe places for people to know and be known. Nothing substitutes for that.
Q: How is the church doing in ministering to those with HIV/AIDS? How can we better show the love of Christ to the HIV community?
A: I would give ourselves at C-minus–not just for HIV–but for so many of the marginalized and forgotten of our communities. We are driven by our self-centered, consumeristic tendencies that dominate our views of life values and people that we miss what it means to live as brothers and sisters in Christ together.
Now, the church is infinitely better than those very sad, horrific early days; but we can always improve, always become the hands and feet of Jesus more.
Q: What graces do you see within (and receive from) the community of the chronically ill that others may not notice?
A: I am currently working on another book titled Making Life Matter which is what I have learned from watching my own illness and the stories of others. We are all chronically ill somewhere. It does not have to be physical, but God gives us lessons for how we can live closer to Him and to one another. An illness, a broken heart, a life wound, a broken edge–God uses these, if we let Him, as means for showing us something we could not have seen otherwise. For instance, we know we are not enough. We know that first things should come first. We know that ‘we always have a choice to live life to the fullest everyday. I could go on and on. These aren’t just cute, simple sayings for us; this is life and death. We have to live this every day.
Stanford also is the chief vision architect and teacher for Making Life Matter Ministries, a teaching and resource ministry. He graduated from The University of Southern Mississippi and Duke University and has two years of training in Marriage and Family Therapy and Ministry Issues. He currently serves on the United Methodist Global AIDS Fund and as a commissioner for United Methodist Communications. He writes a regular blog/e-votion, “Making Life Matter,” has published articles in various periodicals and is represented by the MacGregor Literary Agency and Command Performance Speakers Bureau. He is married to Dr. Pokey Stanford, an associate professor of education at the University of Southern Mississippi in Hattiesburg; they are the parents are three daughters, Sarai Grace (12), Juli Anna (9) and Emma Leigh (5).
A Positive Life is available April 2010
Zondervan
U.S. $19.99, hardcover, 224 pages
ISBN-13: 9780310292920
BISAC category: RELIGION/Christian Life/Personal Growth
Discussion guide included.
His other books include:
The Seven NEXT Words of Christ (Abingdon Press, 2006)
The Eight Blessings (Abingdon Press, 2007)
365 Devotions for Men by Men (contributing author; Abingdon Press, 2008)
When God Disappears (Regal Books, 2008)
You Can’t Do Everything…So Do Something (Abingdon Press, 2010)
Aching for Answers (Abingdon Press, 2010)
