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Personal Story

This Is My Story: An Interview With Ricky Allen Lanza

November 19, 2012

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I got involved in Lorain, Ohio, just going to Task Force meetings. They really weren't doing much, and I said, we should at least be non-profit. They said, Oh, that's too much work. So I decided, I will do it for them. I got the [non-profit] status going, and next thing I knew, I was the Executive Director. I ended up with the job because no one else wanted it. I met patients in parking lots, my house, their house, I'd go to the doctor's office, and we didn't even have a phone number for anybody to call, so I added a third line to my cell phone account. That became the phone number for everybody to call.

We still had nowhere to meet anybody, and there's a non-profit agency called Lorain County Health and Dentistry, they help people medically. I went to their office, and they had an information desk that no one was using, so asked them if I could use it three days a week, because the infectious disease clinic was in the same building.

They said that wasn't a problem. And once that happened, we started growing and growing and growing. And then the Mercer Region Medical Center, the people who owned the space, moved us into another office building, and the infectious disease clinic with us. So then we had this wonderful office -- Mercy Hospital gives us very cheap rent, they included utilities, the air, the heat, gave us internet access and four phone lines, and never charged us a penny for any of it. So I was glad someone was stepping up to the plate.


A bad part of my HIV was in 2005. I hadn't gotten very sick, didn't realize I was very sick, and I had become so lethargic, I didn't realize I had contracted PCP pneumonia. I woke up one morning and felt wet on by backside, and I thought, what's going on here? And Mithc came out of the shower, and I said, Mith, something's not right. That's all I remember. I woke up a week later in ICU. They induced me into a coma, because I was so lethargic with PCP, I had fallen asleep on a heating pad and didn't even know it and ended up with a third-degree burn over my entire right hip.

It was bad. They said I would not survive. And while I was in the coma, they called the family, I was given my Last Rites, they said I would not make it. I did come out of it -- on my own. I didn't even go to a step-down unit, they said, You're doing so well, we're going to put you in a regular room. I still was not aware of what was going on.

I was in the hospital for a month, and the doctor came in and said they were going to release me, but to a nursing home. I said, Why? She said, you have PML, which is a [viral, usually fatal] opportunistic infection which I had gotten on top of PCP pneumonia. She said, It means you have six months. I said, I'm going home. She said, I'd rather you go into a nursing home. I said, I am asking you to release me to go home, or I'll get out of here on my own.

At the same time, the neurologist came in and said, Ricky, we're so happy to see you're alive, but I need you to understand, you will never walk again. And I couldn't handle that. I said, I've been a competitive dancer all my life, and now you're telling me I can't walk?

I got them to let me go home, and three days later I had a stroke. I went back to the hospital, I was there for another month, I was given Last Rights a second time, and again they wanted to release me to a nursing home, and I said, No, I want to go home. And my partner came in and said, If anyone's going to take care of him, it'll be me. And after three months being in a wheelchair, he said, You don't belong there. I couldn't move my legs, so he did it for me. He got me from a wheelchair to a walker, two canes, then one cane, and for the last two years I've led our 5K AIDS Walk.

They tell me I am headed back to the wheelchair, my legs just keep getting weaker and weaker, but for awhile I didn't use a cane. I even went out dancing. Now I'm back using a cane....

This is how HIV has affected me. And I feel I've gone through so much of the bad part of it, I can teach other people how not to get to that stage. I want people to know their status, so I got certified as a counselor for HIV prevention, and I now do the testing. I've taken our agency from meeting people in parking lots to a network of over 30 agencies. That's agencies, not people. We don't ask anybody for money, we ask them for their support. And I have managed to get an entire community to collaborate together, even churches that frown upon us giving out condoms. They've come around, and we have a very successful, 100% all-volunteer agency. We are not funded by the government in any manner. We only raise $2,500 a year at our little AIDS Walk.

And then I became involved with NAPWA and SABER, and I was very honored that they asked me to come down to be a presenter [at the National Healthy Living Summit] this year, because I joined with NAPWA and SABER last year to build a coalition. Ours is in Ohio. We had Lorain City, Illyria City, and Lorain County Health Departments, the Ohio Department of Health, all involved with us. We got involved with the colleges, where we do regular testing, and we also connected with a Spanish-speaking agency called El Centro, the largest one in our area, and we do regular testing there. We attend all the Latin festivals and any health fair that will allow us to come. The only problem is in the faith-based hospitals, where we're not allowed to put condoms on the table. I remind them, You ask me to test people because you know they're having unprotected sex, they need to know how not to come back. So to avoid any confrontation, we brown-bag everything and call them safe-sex bags. And if people ask, What's in the bag, we say, They're give-aways, help yourself -- and it actually works. And when I test anybody, especially if they come out negative, I say, The only thing I ask you in return is, send a friend. Because everyone needs to know what his status is.

If I test someone today, and they come back positive, we get them into care the same day. They don't leave my office without taking an appointment, I take them to the lab for a blood draw, they do not leave my office without knowing everything they need to know about HIV and without having a doctor's appointment set up, so we can get them into care and keep them in care.

But when we have people who are negative, we teach them how to stay safe, we offer them condoms, and we tell them, as long as we have them we'll give them to you and you're always welcome to come back at any time.

So I was very honored to come down here as a presenter about our coalition. And I always tell people, HIV doesn't have me, HIV just happens to be in my life. We've already had three babies born HIV-negative and doing just fine, and I tell people, we need to keep pushing forward to teach the next generation to do what we do and continue our work, because we can't do it forever.

Positive Voice: Thank you, Ricky!

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This article was provided by National Association of People With AIDS. It is a part of the publication Positive Voice.
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Reader Comments:

Comment by: Nancy Ann Smith (Wakeman, Ohio) Wed., Jan. 29, 2014 at 11:37 pm UTC
Working with Ricky Lanza, in my year as a community organizer, was a pleasure and an impromptu training in how to be a dedicated executive director. Mr. Lanza offered training to all of his volunteers, so that they would always be able to help others to apply for benefit programs. Mr. Lanza's commitment to direct the Lorain County AIDS Taskforce as a volunteer shows his volunteers that they are truly all-in-this-together!
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