January 5, 2009
My name is Joseph. I'm 56, and I was diagnosed in 1995. I track my illness back to 1986.
Where are you originally from?
Do you live in San Francisco now?
Yes, I do.
You were diagnosed in 1995: Where were you and how did you find out you had HIV?
1995 ... I was having a problem eating, I'd eat and I'd throw up every now and then. I couldn't hold down my food, I was starting to lose a lot of weight. When I went to a doctor, they checked up on me, they took blood tests and told me that I was positive.
Joseph rides his Harley-Davidson motorcycle as often as he can. Harley riders don't often discuss living with HIV, Joseph says -- though he guesses that others are infected, since he says there are some in the Harley community who use injection drugs. Diagnosed in 1995, Joseph has a supportive family and friends, and says he's currently experiencing one of the happiest times of his life. "What's funny about it is I have this disease, but I don't think about it, I don't dwell on it," he says. "I take care of myself, I do what I've got to do. ... I'm drug free, I've got my life back and I'm happy."
Do you know how you got HIV?
Yes, it was intravenous drug use. That's why I tracked it down to '86 as well.
What kind of drug were you using at the time?
Coke and heroin.
You were sharing needles at that time?
Not sharing -- they were clean, but it didn't seem like they were clean, you know what I'm saying?
You didn't sterilize them properly?
How long had you been using intravenous drugs?
I had been using them for about 10, 15 years, on and off, nothing really.
You weren't an addict.
Not every day, no.
Were you very shocked when you found out?
Yes, I was.
How long did it take you to get used to it?
I can tell you truthfully, it took a couple years.
What helped you?
Faith, and then knowing that I've always been a person on the go. I left home when I was a young kid. I decided, hey, life goes on. I was traveling all throughout my youth on a motorcycle, working and going new places and just traveling and having a good time. I decided that it was time to keep on with my life and not let life in general destroy me when it came to the illness or anything to do with it.
When you were first diagnosed, did you go to the doctor?
Yes, I did, and I got put on a regimen right away. That's when the cocktails just came out, and a company in New York shipped the doctors the medicine.
I had gone home to die. I couldn't sleep, my body was consuming itself, you know? I went home to die. I finally said, "Oh, no, I'm going to go back to Washington" -- which I consider my home. Sure enough the doctor called me and said, "Joe, get over here, we've got something for you."
I ran and grabbed my brother, he's a police officer, and told him, "Take me to the airport right now." He did, I got on the plane, got off the plane, got on the medications, and kept on going with life.
Were you still using at that point?
No, it had been years since I quit.
You quit cold turkey?
Yes, I just quit.
Who was the first person you told you were HIV positive?
My immediate family.
Can you describe their reaction?
They were kind of awed and shocked. There were some tears -- actually a lot of tears. But there was also a lot of support, from cousins and aunts and my brothers and sisters. They sometimes joke around with me, "Oh, you're lying, you can't be sick because you're always ... " But they know I am and it doesn't bother them a bit.
I mean, there are a lot of people that still have this thing in their mind that you're poison, you're a disease, a walking disease, you can spread it to them casually -- you know what I'm saying? You can't spread it to them just by talking, but there are a lot of people out there in this world that haven't read about it, that haven't really looked into it. They make comments that don't make any sense, whereas my family members and friends, they went and studied about it. They went and got books.
They discovered the truth -- that it's not transmitted casually.
Yes. But there are still people out there today, after all that's been published and printed about HIV, and they just don't want to let go of their old stigma. They don't want to grow out of it.
Do you think it's a particular problem in the Hispanic community?
Oh, it's a big one because of male machismo.
How does this affect you? Does everyone assume you're gay?
Oh, I'm not gay!
I know, but meaning, because it's considered a gay disease by a lot of people.
Yes, a lot of them think, "Oh, then he must be gay." Even since I moved down here, a friend of mine, one of my relative's husbands -- he's that type. I don't have time for people like that.
Not that I'm trying to be rude or ignorant or belittle anybody, but if I'm going to socialize with somebody, they're going to be at my level with me. Or I'll say, go play your own life, your phony life, whatever it is. I'm for real; I have a disease and I deal with it, and I deal with life the way it should be dealt with, you know? There's only so far you can go with some people, some people just don't want to face the realities of life.
Have you suffered through a lot of stigma?
No, no I haven't. I don't let it bug me, or nothing like that.
How did you find a good doctor?
Did you have health insurance at the time?
I didn't, but I got it pretty quick! At that time, they were giving social security to people that were diagnosed -- they figured I was going to die. So they said, "Let's take care of him" -- and they do. There's no way I can pay for that medication. There's no way even working or anything that I can pay.
It puts you in another catch-22, because now you've got all these medications that you pay for. If you get a job and you work, then you can lose social security and lose your medication. You're in catch-22 limbo everywhere you go. You've got to be really careful how you do things, how you approach them, everything you do, because you don't want to lose your medical coverage. You don't want to lose your medicines or anything like that, because it's important to living a healthy life.
When you first were diagnosed, did you go to support groups?
Yes, I did. In Tacoma, Washington, I went to a foundation there. That's how I met my doctor, a specialist out of Seattle. I've been with him for about 15 years, maybe more.
What's his name?
Robert Killian, Rob Killian. He's not only a doctor, he's a friend! That's how it's come to be. He's a friend. And he cares, you know? It says a lot.
What advice would you give someone who was recently diagnosed with HIV?
Don't get into a corner and cry and lock yourself up. Come out of that little closet, because if not, it'll consume you. There's a life out there. No matter what you have, there's a life out there. I love to go hunting, I love go backpacking, I love to travel, you know? That's what I like to do.
So having HIV doesn't stop you from doing the things you like to do?
No, but then I got into a serious motorcycle wreck two years ago -- drunken driver, three-time DWI [driving while intoxicated], three times on a suspended license, cut right in front of me on my motorcycle. I landed up on a helicopter flight to Harborview Hospital in Seattle because I had a shattered pelvis and I was in a coma for two weeks. I went into hospice and with the help of the nurses, and the hamburgers and food that I brought in in the evenings, I was able to walk again. I pushed it to the limit -- when you come home and can barely move around, you're on your hands and knees through the whole house, it takes awhile to live. I can't hunt anymore, but I can still ride, and get along, and do what I gotta do and go where I gotta go.
You still go on motorcycles, then?
Oh, I got a beautiful brand-new Harley, and I just love to ride it. I get on it and ... Life goes on, and I enjoy it, you know?
What's funny about it is I have this disease, but I don't think about it, I don't dwell on it. I take care of myself, I do what I've got to do, what's got to be done. But it's one of the happiest times of my life.
I'm drug free, I've got my life back and I'm happy. I've got good friends, as well. Some still don't know that I have the illness, because -- they'd probably -- I don't want no pity or any ... . Life goes on.
How friendly is the motorcycle community to people with HIV? Is that a tough world to come out?
Yeah, it would be.
Especially the Harley community!
I think it would be because they're into the -- "It's a gay thing," you know? Some do understand, because some of them have HIV as well, but a lot of people keep it quiet. Not too many people are open about it, because if anybody gets high, they do!
Let me change subjects now: Can you tell me if you have found love since you tested positive?
Yes, I have. Some of the most beautiful girls I've ever been with in my whole life. I'm at a point in my life right now where I want to do more traveling. I'm trying to find somebody that I can travel with and go places and do what I like to do. The only person you can do that with is somebody with the same issues you have.
Are you dating in the positive community?
No -- with negatives. I'm going to see if I can find somebody that's got the same issues I've got, that doesn't mind having a good life.
Are there heterosexual support groups, social groups, in San Francisco?
Hetero support groups up here? Even in Washington State they're disappearing, because a lot of people are undetectable, they're doing better in their life, and they don't want anybody to know, you know? So they keep to themselves. Before, when they were coming out, you had a lot more people in the support groups. Now that life is easier for us, it tends to keep them away from it. That could sometimes be good, sometimes it could be dangerous. I say, sooner or later, someone will pop up there.
How has HIV changed you?
It made me a better person. More open to friendships, and who I am -- being open with a lot of people about certain things in life. Not about the HIV, but I try to help out a lot of people. I'm a giving person. Just being in general a decent human being is what it is.
Why do you think it's important to be public about living with HIV? What gives you the courage to do this?
Because even though I love my life and it's the happiest, it's also been a lonely time.
Why has it been lonely?
You have nobody to really share your problems with, in depth. You know? Somebody that can relate with you, that can understand you.
Because you don't want to tell them that you have HIV?
Disclosure, telling that secret, has been really hard for you.
Yes, because you just can't trust everybody.
You're afraid somebody's going to tell someone else and it'll get out.
It's like a running river.
I've got one good friend that truly, sincerely -- we've been through a lot. He's got HIV. He met a girl he really cares about now, and she knows he's positive. She's negative. They're together. But when we've got problems, we're on the phone to each other. We keep each other's back up, keep our hearts up high.
That sounds great. It's very important to have that kind of support.
Are you in the Spanish support group at the San Francisco AIDS Foundation?
That's about the only one I could find! When I did come in, there are more gays here than there are straight people, but I finally came to the conclusion, hey. At one time you wouldn't have caught me around, but -- they're so funny sometimes, they come up with just as good a joke as any other person. We've got some characters there. Just like all my friends say, "You're the character, Joe, you're the party." They're fun to be around every now and then.
So you've become a little bit more gay friendly? It sounds like you didn't start out very friendly toward the gay community, but you've come around?
It's sensitized you to difference.
Yes, well, my niece -- she looks like Halle Berry, even better looking -- they're identical, and she's a lesbian. I'm going, "Oh, no!" [laugh] I say, "Are you sure ... ?" I've got to deal with it.
It's everywhere, right? [laugh]
Why do you think there's still so much stigma, regarding living with HIV? Do you think it's the gay issue? Do you think it's more socially acceptable for a man to have gotten HIV from drug use and sharing needles or from sex with other men?
Truthfully, I don't think it makes a difference. People just don't want to be around someone with HIV because of the fear of catching it. A lot of people really don't read up on it -- they don't have the time, they don't want to bother with it! Instead of educating themselves, they won't do it until something in their family happens, and then they read about it -- when they could have read about it a long time ago and prevented that person in the family from getting it! You get what I'm saying? Nobody wants to educate themselves.
All this money that's been spent on all this HIV education, some places it works and some it don't. But it's up to a person to really dig, to get in there and really read about it. But nothing happens until it happens to them or someone they really care about. Sometimes it's too late.
Are you on treatment now? What's your treatment regimen?
I can't remember what pills they are. I never keep it -- it's a three-pill regimen that I take.
How do you remember to take your treatment every day?
I take it first thing when I get up. I take it once a day, everything in the morning.
You don't have any ambivalence -- you're very committed to doing that every morning?
Yes, and it's good, 'cause I've noted the difference, too.
If you don't keep up with your meds, and you forget one day, forget a few days later, you tend to lose. What do they call it?
You're no longer susceptible to the medications.
Yes, it's important that you keep it up because your body can only take so much, and there are only so many things on the market available now, you don't want to burn your bridges.
Your HIV could develop resistance to the drugs if you don't take them on time.
Yes. That's the one that you don't want to get into, because then if there's nothing else that'll work for you, you're up a creek without a paddle, you know? You don't want to do that. When you get up in the morning, take them first thing in the morning, drink some water and just go from there.
Was this something it's taken you awhile to get used to?
Yes, it is. I was on my first meds for -- gosh, I'd say nine years on the same meds. I could still have taken them.
Did you get resistance?
The doctor wanted me to switch off them because of my body changes and everything else.
Did you experience body shape changes?
Oh yes, it got a lot better than it was. I started to get that buffalo hump, now that's gone down. My stomach is almost flat again, but I jog, I swim. I live in an area where we've got a pool where I'm at, and a gym. So I keep busy.
You're trying to keep in shape. Do you have other side effects from your meds, besides the body shape changes?
No, I've never had any side effects yet.
Oh, OK, great!
Not yet. Sometimes dry skin, and that's about it. I use a little bit of Dove soap with cocoa butter and I'm OK. [laughter] Butter up! In the sun, in the summer, I get out to the pool and butter up.
Thank you very much for this interview!
This transcript has been lightly edited for clarity.
To connect with Joseph, click here.