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Terry Johnson

By Sarah Warmus

March 2007

Terry Johnson 

About Terry Johnson

Table of Contents

This interview has been altered from its original format. Statements have been re-ordered for clarity, with permission of the interviewee.

HIV Diagnosis

How did you find out you were HIV positive?

I tested HIV positive in 1994, when I was attempting to re-enter the Alabama National Guard after getting out for a year. My last test had been in 1992, and it was negative. I was not really prepared for the positive result. I do not think anyone ever is. I knew that I had unprotected sex with many, many men over the years. I figured if my behavior did not change, it was bound to happen -- something like women who get pregnant without trying, and think they have finally gotten caught. When I received the positive test result from the colonel in the military, I was quiet. I just listened, somewhat numb, but I was all right.

How long do you think it takes to process a diagnosis?

I think processing a diagnosis differs from person to person -- there are so many stages to go through. For me, it took five years, but I am still adjusting.

I think there is a stage of shock, when you think this cannot be happening to me. Then comes denial: If I don't think about it, I will be all right. Next, there is acceptance -- surrendering and embracing the virus as something you can cope with and be healthy with. Then there is the stage of making lifestyle changes, getting rid of anything that might hinder you from a positive life as an HIV-positive individual.

"HIV put me on a roller coaster where I was expecting to get sick at any time and then wait to die. It never happened. HIV has changed my life because I value life more. I am more spiritually connected."

When I say I am still adjusting, I mean I learn something new every day. I am content with my HIV, but I still get burnt out on the subject. I am adjusting to the fact that not everyone will get to the place of acceptance I am at.

I am very spiritual and believe in a higher power. I have a message of hope for anyone who will listen, and I will assist them on their journey to wholeness. But I have learned not everyone wants fixing -- they do not want wholeness, they do not want recovery. There are some people who like confusion and dysfunction. I had to learn to let them be where they are, and for me, that is an adjustment.

How did you get HIV?

I got HIV from unprotected sex with a man.

How have your feelings about having HIV changed over time?

I am less afraid of my HIV because I have become more educated. Before I tested HIV positive, I thought of HIV as a death sentence that only weak people got. When I got the positive diagnosis, I had to rethink my perception of what HIV was, because I know I was not physically or emotionally weak. I became willing to learn as much as possible about the virus and living healthily with it. I decided to educate myself on the modes of transmission, prevention methods and on HIV in general.

How has HIV changed you?

My diagnosis has given me more compassion for people who are suffering from addiction and are newly diagnosed with HIV.

How has HIV changed your life?

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HIV has changed my life in many ways, but the two biggest ways are career-wise and financially. When I got the diagnosis, I refused to continue to work in a hospital setting, and I decided to retire and enjoy the rest my life. I received my Social Security right away and sold several insurance policies, so I had the money to buy whatever I wanted and travel a great deal. I spent everything I had, filed bankruptcy twice, got bored and went back to work two or three times -- for the income and to have something intellectual to do.

HIV put me on a roller coaster where I was expecting to get sick at any time and then wait to die. It never happened. I bought all this stuff, got all these bills, and now I have to pay for something I thought I would not even be around to see. HIV has changed my life because I value life more. I am more spiritually connected.

What advice would you give someone who has just found out they are positive?

I would tell someone newly diagnosed with HIV to have a positive attitude. HIV is not a death sentence. A person can live a long, healthy, productive life with HIV.

Personal Bio

Tell us a little about your life.

I am a 44-year-old, African-American gay male in recovery. I am recovering from several addictions: alcohol, sex, shopping -- I have an addictive personality. I currently work as an HIV prevention specialist.

I do not have any children or a partner, but I do have siblings and a loving, living supportive mother.

My parents had seven children: six boys and one girl. I am the third oldest. I lost a brother, Randall, to AIDS in 1994 -- we were one year apart in age. My family is unusual: Out of the seven children, three of us were GLBT [gay, lesbian, bisexual or transgender]. I have a loving and supportive family, especially my only sister, Shelia.

What do you do as an HIV prevention specialist?

I am the facilitator of the Brother-to-Brother program at Birmingham AIDS Outreach in Alabama. I am training for the Many Men, Many Voices intervention to incorporate it with the existing components of the program. Brother-to-Brother is a secondary HIV prevention education program that provides emotional support, social activities, buddy companion service, counseling, case management and care teams to MSM [men who have sex with men]. I do community outreach, HIV presentations, counseling, testing and referrals. I work with newly diagnosed individuals and persons who have fallen out of care to get them back into care. I also do assessments for substance abuse treatment and assist men transitioning out of prison with services. I facilitate four groups: Brother-to-Brother, Covenant POZ Group, Vet-to-Vet and Roxy's Room.

Where did you grow up?

I grew up in a neighborhood in East Birmingham, Ala., that was predominately working class African-American, where a majority of the mothers were housewives and the husbands worked in the steel plants or some type of industrial labor. The neighborhood consisted of families with three or four generations still residing in the area. It was close-knit: all the children went to the same school, everyone in the neighborhood went to the same Baptist church, everyone knew everyone, and anyone could discipline you, if you were caught misbehaving. The neighborhood was so close you did not have to lock your doors.

For me, it was boring and a trap I did not want to get caught in, because I knew there was much more to the world and life than marrying and living in this neighborhood. After high school, I moved to Washington, D.C., and lived there for a year working as a personnel clerk at the National Cancer Institute in Bethesda, Md., I was 17 years old. I returned to Birmingham in 1981 and started Jefferson State Community College and worked at the U.S. Social Security Administration, until I enlisted in the Army in 1983.

What did you want to be when you were a kid?

When I was a kid, I wanted to be a lawyer or a doctor. I didn't stay focused. I lost the desire to really compete academically, as well as the desire to apply myself to anything that I actually had to study and work at. There were some talents and things that were easy for me --- a blessing or a gift from God -- and I went with those abilities.

What kinds of work have you done?

Fast food manager at McDonald's and Subway, unit and medical secretary at a veterans hospital, and school secretary with the Birmingham School System at Tuggle Elementary School.

What do you like to do in your spare time?

Read, write, listen to jazz, cook, socialize, travel and shop.

Are you a religious or spiritual person? Do you attend a church?

I'm most definitely a spiritual person. God is my strength, the head of my life and my higher power. I attend church. I am on staff at my church coordinating the HIV/AIDS ministry called The HOPE Project. [For more information on The HOPE Project, visit www.covenantbirmingham.org]

African-American Identity and HIV

When did you first realize that you were African American?

I first realized I was of color when I was called "negro" in 1969, at the age of six. I was called black in upper grades. I was singled out in the head count for the school's office demographics. This went on all through my years at school -- how many blacks and whites in each class, they wanted an equal ratio -- and it continues today in Birmingham. They count how many boys, girls and how many blacks, whites and others are in each class.

I still struggle with the term "African American" because I feel I am an American. I am a disabled U.S. veteran who fought in Operation Desert Storm as an American. I know nothing about Africa, and I don't know of any relatives from Africa. I am just an American. I think the term is another way to cause division among the races. We don't make it a habit of breaking Caucasians down into categories of whiteness such as Irish-American, English-American or Italian-American.

How have you learned to deal with racism?

I've confronted racism head-on since I was in the first grade. I was the only little person of color in my first-grade class out of 29 other little kids. It was the beginning of integration, and a lot of the teachers and the principal did not want the coloreds in the school. I learned early that I had to be twice as good, as well as stand out as a unique person, to get recognized. This really was not new to me because I had a similar competition going on at home: I was the middle child out of five, and sibling rivalry was fierce -- for the best grades, most points on the little league team and just getting our parents' approval.

When I say I dealt with racism head-on, I mean that if I even felt the teacher or anyone was discriminating against me because of my dark skin, I would just outright bring it up. I fought to be the line leader in my class. I fought to be first to read. I was determined to get my turn, and if I could not, or was not allowed to, I wanted an explanation. My parents kept me at the school because I would not be ignored based on my race. I had something to say, and I was going to be valued. It helped me later on in life to recognize the signs of someone who was racist, as well as how to deal with racial discrimination in the workplace.

What is the biggest challenge facing African Americans today in terms of HIV?

"My fear for the next generation of African Americans is that the disease will get out of control. I fear they will ignore all of the prevention messages. HIV is still thought of in many circles as a gay disease, but we all know it is spreading among young African-American females at an alarming rate."

I do not think that there is one set answer in discussing the challenges facing African Americans; I think it is multi-faceted:

Are there any specific aspects of African-American culture or identity that give you strength?

Overcoming adversity through struggle and my faith are two specific aspects of African-American culture that give me strength. I feel as a people we have had to go through some tough times to get across social, racial and economic barriers, but it is our faith and trust in God that sustained us through it all.

What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?

There needs to be a realistic approach from the abstinence base already in place in the U.S. The Bush administration and the U.S. Center for Disease Control and Prevention's current programs and policies stress abstinence-based HIV and STD [sexually transmitted diseases] education. In actuality, people are sexual beings, and they -- kids and adults -- are having unprotected sex. More advertisements, prevention efforts and education should emphasize consistent condom use each and every time you have sex from the beginning to the end. We need to talk more about safer sex and other alternatives to intercourse, and be more realistic about what's actually going on in society today.

What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?

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My fear for the next generation of African Americans is that the disease will get out of control. I fear they will ignore all of the prevention messages. HIV is still thought of in many circles as a gay disease, but we all know it is spreading among young African-American females at an alarming rate.

My hopes are that everyone one wakes up and gets tested and gets educated. I hope people wake up and realize God made many different types of people and placed them on this earth.

There are men on the down-low, homosexual thugs who are not going to be honest about their sexual behaviors and don't identify with being gay because of fear. A large number of young males, because of situational experiences, have unprotected same-sex experiences in jails and prisons but do not identify with the gay lifestyle.

Another category is guys who trick and hustle for money and drugs, and prey on gay men willing to pay but don't disclose their status. The message should be to:

When I hope for education, I mean learning about HIV and the fact that it does not discriminate based on race. People need to learn not to judge or criticize people's lifestyles or choices.

HIV, Health Care and Treatment

What has your health been like since your diagnosis?

"The VA system is the single largest provider of HIV care in the U.S., which is a little known fact, because no one wants to relate HIV with our military."

My health overall has been good. I went through 48 weeks of hepatitis C treatment and had one medication-induced diabetic episode, but other than that and a little depression off and on, it has been good.

My largest obstacle has been myself, with honesty issues and actively using substances. I have battled with an addictive personality and obsessive compulsive disorder all my adult life, coupled with bouts with depression. For years these mental health issues went undiagnosed, so I self-medicated with alcohol to ease the pain and tension. I tried to cover it up. I was in denial, and I explained away the devastation that alcohol was causing in my life, relationships and career.

Addiction -- chemical dependency or substance abuse -- is progressive, so I moved on to harder drugs recreationally. I was a functional addict, but my life was unmanageable because of actively using cocaine. My mental health improved once I had that spiritual awakening and made a commitment to a life in recovery. Self-help programs work; the 12 steps work, if you work them.

Why did you decide to start and then stop HIV treatment?

I started HIV treatment in 1997 because I was encouraged to do so by the U.S. Health Resources and Services Administration guidelines at that particular time -- my CD4 counts were still in the 1000's. I stopped in 2001 after hepatitis C treatment for a structured treatment holiday. I have been off treatment for six years now and doing well so far, thank God!

How did you choose your current doctor?

I did not; he was assigned by the U.S. Department of Veterans Affairs [VA].

Do you think you are getting the best care possible?

Yes, I think the VA provides veterans with excellent care. The VA system is the single largest provider of HIV care in the U.S., which is a little known fact, because no one wants to relate HIV with our military.

Do you think a doctor's race has an impact on the health of his/her patients?

No, I do not think a doctor's race or sex has an impact on the health of his/her patients. My doctor is not African American. I think the doctor being culturally sensitive, diverse and aware of the patient's individuality and different background is what's most important. Race is not the only bias that could have a negative impact on a patient. I think a homophobic doctor could have an impact, a right wing, conservative Christian doctor could also, and so on.

My doctor is just a polite gentleman who explains the reasoning for a six-month visit versus one every three months. He explains his way of treatment so that I can understand it. My doctor does not seem to be in a hurry, and he allows for questions. I just feel that I am in a partnership with the doctor versus him dictating a protocol to me. I educated myself to be able to have conversations with my health care provider and to be able to take an active part in making decisions. I advocate being proactive rather than being reactive when it comes to my health care.

Do you have a particular health regimen that helps you stay well?

I believe in a healthy diet -- you are what you eat. I also take multi-vitamins and immune boosters.

Disclosure, Relationships and Sex

How have your relationships with family and friends changed since you were diagnosed?

"When I tell someone for the first time that I'm positive, I just say that I am living with HIV. I consider HIV to be a chronic disease, just like hypertension. I have had this virus for 13-plus years and have never been sick because of it. It is all in a person's attitude, being positive or negative. In my experience, people who get out and live life to the fullest do well; people who maintain the deep, dark secret and go into hiding have problems."

There has never been a change from day one. Sometimes I think that they have forgotten that I am HIV positive. It has never been an issue.

How do you decide whether to disclose your HIV status to someone?

I tell people my status based on their need to know. That's what I advocate when educating anyone with HIV about status disclosure. Your doctor needs to know, your dentist need to know, but cousin Edna, who cannot hold water and loves to gossip, does not have a vested interest in knowing. I strongly believe in disclosing to sex partners. I think it is moral, legal and just the right thing to do.

When you disclose to people, how do you start the conversation? What do you say?

I came out publicly at a seminar for 2006 World AIDS Day as the new face of HIV, and then in the December/January 2007 issue of HIV Positive! magazine. (I was on the cover.) [Read Terry's "Positive Profile" at www.hivpositivemagazine.com/terry.html]

When I tell someone for the first time that I'm positive, I just say that I am living with HIV. I consider HIV to be a chronic disease, just like hypertension. I have had this virus for 13-plus years and have never been sick because of it. It is all in a person's attitude, being positive or negative. In my experience, people who get out and live life to the fullest do well; people who maintain the deep, dark secret and go into hiding have problems.

How has your sex life changed since you became positive?

I am less sexually active and more responsible. I have very few sexual encounters. Two years ago, I decided I was not just going to settle for any ol' guy, so I decided to abstain from casual sex. If I did decide to have sex today, it would be protected sex. I am holding out until I start dating or until I get in a relationship.

What is the best response you have ever gotten from telling someone? And what is the worst response?

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When I was initially diagnosed, I told my best friend that I had tested HIV positive. He just said, "You will be all right. I have been living with HIV for three years without any problems." I was shocked, because we had been best friends for 16 years -- since high school -- and I thought we didn't have any secrets.

I have never had a negative response yet!

Resolutions, Adventures and Likes

Did you make any New Year's resolutions this year?

Yes, to lose weight and start back working out. I have gotten off track, stopped dieting and exercising, and as a result I have put on 65 pounds.

What's the greatest adventure you've ever had?

Serving in the U.S. Army in 1990 during Operation Desert Storm was the greatest adventure I ever had. Not knowing if I was going to live or die because of the Scud missiles and the uncertain intelligence on Saddam Hussein and whether he had chemical or biological weapons. It was a scary and frightening experience. Being in the war was an adventure because the experience took me to a place I never thought I would go -- near death, fearing death. What I learned from the experience is to trust God and have faith, a man without a vision is dead, and I had lost all hope before this period of time.

If you were granted one wish, what would it be?

To be able to travel around the world to all the continents and experience each culture's food, sites and city life. I really want to go to Kenya, Africa, because of the beauty of the jungle, the animals and the people.

TERRY'S POST-DIAGNOSIS MEDICAL HISTORY AND UPDATES
CD4+ Count (May 2008): 850   Viral Load (May 2008): <1000
Medications, Side Effects and Illnesses (chronologically)
1994: Year of diagnosis
1997: Started HIV meds even though his CD4 count was 1,200 (at that time it was recommended that all HIV-positive people be on medication) -- Videx (didanosine, ddI) + Retrovir (zidovudine, AZT); experienced nausea and diarrhea
Switched to Crixivan (indinavir) + Epivir (lamivudine, 3TC) + AZT; struggled with expanding waistline, pill burden and having to drink too much water
Switched to Sustiva (efavirenz, Stocrin) + Zerit (d4T, stavudine) + Ziagen (abacavir); this was his best regimen
2000-2002: Took structured treatment holiday
2001-2002: Went through hepatitis C treatment for 48 weeks ? Pegintron (peginterferon) and Rebetol (ribavirin) tablets; his hepatitis C has been undetectable since 2002
May 2008: Terry is not currently taking HIV medications

Updated May 2008

Click here to contact Terry Johnson.




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