"my positive life"

Roberto has been living with HIV/AIDS for 27 years. In this testimony, he tells about the years of despair followed by rebirth. Today, he has found a new "family" and a new hope.

I am now fifty years old. I have been living with HIV for more than half of my life, 27 years. I feel good now, but the story of my life has not been easy. Some diseases are still giving people very little hope. However, with scientific advances, some of them that were lethal not so long ago have become chronic diseases with which one can live a normal life for years.

As many people did at that time, I got AIDS due to my drug addiction problem. The first time I used drugs I was in my teens, and they became my raison d'être for years. The first signs of the disease broke out in 1982; I was in the military at that time. One morning I woke up with a swollen neck lymph node. "It's probably an infection," the doctor said, adding not to worry. I had no fever, no pain, so I didn’t pay much heed; I thought it would disappear soon.

Meeting HIV
The lymph node was the first symptom of what was going to happen to me. HIV positive; I found out in 1984. At that time in Italy there was much press coverage about a new, terrible plague - a deadly infection that seemed to affect solely homosexuals and drug addicts: a blood-borne and sexually transmissible disease… Back in those days drug abusers like myself used to share needles and other materials.

Positive, in What Sense?
In 1986, after I recovered from hepatitis, I decided to undergo HIV testing. One week later, the results came in. I showed up at the hospital where they handed me a closed envelope. I tore the envelope open and the first thing I saw was a large red seal with the words "positive" in capital letters. At first, I did not realize the meaning of “Positive”. I thought it meant I had not been contaminated. I was in full mental confusion. I then got in touch with my doctor over the phone. He tried to comfort me before asking me to visit him. The following day, he confirmed the test's results and tried to comfort me again but in his eyes, I could read my upcoming death.

I Told my Parents
In the meantime, I had told my parents about my situation. It was a shock. As with most of the people back then, my mother was unaware of AIDS and did not know how to behave. Newspaper headlines only mentioned death and the 21st century plague. She was afraid of loosing her child, but she was also afraid of having the remainder of the family contaminated. I soon began to organize my medical follow-up at the city's hospital. After performing some analyses, the doctors said my immune system was compromised and provided me with the sole medication available at that time, Retrovir®. I began injecting more and more heroin every day; it was the only activity that could take my mind off things.

Living Death
At the beginning of 1991 I decided to enter a drug treatment program to get rid of my addiction problem; however, my health broke down rapidly. My immune defenses were terribly low and nothing seemed capable of stopping the virus’s progression in my body. A few months later I was sent to another facility next to a large hospital specializing in infectious diseases. There, I met many young people; almost every one of them was HIV positive and many were at the AIDS stage (the symptomatic stage of the disease). Every month, at least one of them passed away.

As the years passed, hospitals' infectious diseases wards became packed with patients. There was no room for newcomers. Some young people, staggering with fever, were housed by friends, since no hospital department was able to take care of them. I personally was deteriorating. I had a persistent fever, for which no one could find the origin. I then began to take a medication that was available in Switzerland only. My friends had to go there to get the medicine.
My immune system had collapsed. Opportunistic diseases assailed me: pulmonary infections, esophageal candidiasis, cytomegalovirus… to name a few.

I spent three years in and out Pavia's San Matteo Hospital. More in than out - a two-month hospital stay followed by a few days at home. Unexpectedly, I was still conscious and clear-sighted about what would come next, but I would not give up despite the fact that I weighed 85 pounds and was unable to keep my head upright. Years passed. I was still in the infectious disease ward. I could see fear in my friends' eyes.

E112, Friends and Recovery
It was 1997. I received a phone call from a good friend of mine. Great news! "I heard that there was a new medication available in France. And it works". I had been told that in France some people who were supposed to die were in the process of recovering. My friends and family sped into action. I eventually got the E112 administrative form providing healthcare assistance service abroad, including medication. I was prescribed antiretroviral tritherapy, a three-drug combination – Crixivan®, Zerit® and Epivir®. However, back at the hospital in Italy, the doctors, unaware of this new treatment, recommended not taking it, but I did it anyway. After a couple of weeks, I began to feel much better, something was happening in my body. I could feel life blooming again. As time passed by, I felt better and better, in my body and in my mind. I found new motivation.

Thanks to this new treatment, and thanks to my friends and my family, I was eventually able to go back to a normal life. I was living again; I could receive and I could give. Ten years passed. I had come very close to dying, but today I belonged to the world.

The Strength, in Oneself and in Others
Never have I felt lonely, even during the most painful moments. I had felt an ongoing fear of dying, but at the height of my ordeal, I could find something precious: love, support and solidarity from those around me who were able to make me feel like a human being, alike all other human beings. What also gave me strength was all those who could live with the disease, if not accept it.

Today I have overcome my fear. A little more than one year ago Dianova hired me. My job consists of organizing the center's activities and the counselors' daily work, while I make sure that people's needs are being met. I love my job; each one of my colleagues brings human kindness and professionalism to forty residents living in the center. AIDS has become commonplace, and it is a now a mere chronic disease. However, we must not lower our guard.

At Dianova we try to continue providing information to people; we want those concerned to accept the disease. We teach them to live in spite of it, to respect others and to complete their rehabilitation project. But most importantly, we teach them to care for and to love themselves.

Roberto