My name is Maria Aparecida Lemos; I prefer to be called Cida Lemos. I am 54 years old, I live in Rio, and I am a person living with AIDS. I have been infected since 2000.
I never thought that AIDS could one day be part of my life. I am a retired teacher, and I always guided my students to take care of themselves, to get treated, and I thought I was immune. When we have little information, little knowledge, we end up not believing that some things can happen to us. I was 45 years old when I was diagnosed, and had never met anyone who had AIDS. I thought only artists got it, or other people—but it happened in my house, in my bed.
A year later, in 2001, I went blind due to an opportunistic disease, a cytomegalovirus that attacked my retina. I lost my eyesight after having five surgeries in each eye. From the moment I went blind, everything changed.
I am usually told I am very strong. People invite me to give talks about my life experience. But I didn’t have any other option. I can stay at home sulking and crying, or I can raise my head and fight. For a year I stayed at home crying, but that didn’t take me anywhere, so I decided to get up and do it differently, seek new challenges. I can say I make myself proud at times.
The symptoms started showing up and for a year I was told that the pigmentation on my skin was due to the stresses of my job. When I came down with rheumatic fever and lupus, a doctor requested I take an HIV test. I was sure it would be nothing serious, so I did it.
I did not react to the news straight away. I was told it was a serious condition and that I would need proper medical treatment. My sister-in-law and a friend came along and were crying at the news, and I wasn’t. The doctor had an appointment with a specialist already arranged for that day. I did not want to go, but my friend and sister-in-law urged me to go.
Getting there, I saw very thin people, and I didn’t want to stay. I didn’t want to end up like them.
The first thing I asked the doctor was how much time I had left. He told me that he would die first and his patients would live on.
In the first days my brothers wanted to tell my friends that I had cancer, afraid of the prejudice. But I assembled my brothers and told them that my life had always been based on the truth, and I would not start lying now.
So the girls from the school I retired from were called to the hospital, and there, I myself made sure I told them what I had: I didn’t have cancer, I had AIDS, and from that moment on I would need them. I needed to speak to women of my age group who thought they were immune, because we think love immunizes us from disease and danger. I said, “The moment I get out of here, my mission is to guide people, to say that we’re all vulnerable. From the moment we have active sex lives we’re vulnerable, and we need to stay alert. There is no greater proof of love than a protected relationship.”
Then my new life began, as a woman living with HIV/AIDS and also as a woman showing her face. We may know of many women who are infected, but they’re ashamed, they’re afraid to show themselves. I take this opportunity to speak on the behalf of all the women infected today. We don’t need to be ashamed of disease, but instead we need to respect one another, we need to care for one another.
For me it was harder to accept going blind than being HIV-positive. I was co-responsible for my condition once I decided not to use a condom anymore. I knew I had to use it, and my boyfriend and I used contraception initially, but after a year we stopped. Once you have sexual relations you have to look after yourself. I learned that late and today I approach it differently.
But I think that the blindness happened because it took the doctors a long time to diagnose me with HIV because of a certain prejudice. Since I didn’t have a boyfriend or partner, the doctors did not consider the possibility of me being HIV-positive. So I was diagnosed very late, and as a consequence I am blind.
Because I live on my own, it was very hard when I went blind, and my family wanted me to move in with them. But I did not want to lose my privacy, nor interfere with theirs. It was hard and still is. It is like being a baby all over again. I already knew the space inside my flat very well, but at times when people tried to help me, they ended up moving everything around. I couldn’t find anything.
I cried a lot for losing my sight. It was hard to lose the right to come and go as I pleased. Inside my house, I cook, clean, do everything as usual. But I am afraid of going out on my own.
I thought the wounds had healed but when I took the pictures for this project, I longed to see what I had done. When I took these photos everything came back to me, and the pain was so much. But it was nice to talk about it afterwards. And then I went home and took some more photos. At first it was a challenge because it was something I used to do regularly, but this was different. I really got comfortable with the camera and it was a wonderful experience. Any disability is hard, but not being able to see what you do is tough.
Some pictures tell a lot of my life and how I see it. There are good things and bad things, but we have to choose the good things—but not to be in denial. There is always something good to be learned. I call my collection Projeto F (Project F), because of all the things that affect me: Family, Friends, Fatality, Future. You will be able to see these things in all in the pictures I took.
Yesterday I was taking pictures with a friend, and people stopped to look, saying, “A blind person taking pictures?!” I had help at times, but I did it.
When I went blind, I realised I needed help and also that I could help others. In those first moments, when I sought help, I thought I would be only seeking help. But I discovered I could also offer help. And it was really good for me, because the more I said to people, “You’re going to get better. Take care of yourself,” the more I heard it too. I heard it and I got better.
I started a project to gather funds for the blind from selling crafts. I never thought I would end up doing something like that. I got needles specially made for blind people, and started doing it. Eventually, the others stopped but I continued. I have kept the bracelets and necklaces I made for one day, if I am able to see again, I would love to know what they look like. But sometimes it hits me really hard that I might not be able to see again. I still keep these pieces with me though. I still believe in the future. I have felt very frail, but like my pain, these pieces have all been tucked away. We need these things to remind us we are alive.
I am grateful to God, because I am being able to rewrite my life story. I can still talk, I can touch others, I can hear. I cannot see but I can feel. It’s good for everyone, because for me everyone is beautiful!
I as a blind person I always say that I don’t need anyone to have pity on me. I need people to respect me, to understand that I have desires and dreams like everyone else. I have some limitations, but I’m not incapable of doing the things I want to do or to facing the challenges that life throws at me at every moment.
I would like to say to all people, whatever your pathology, whatever disease afflicts you, don’t be afraid. Face it and have courage, because only you can help yourself. All of us who are here today are here because we had the courage to face our reality and continue living. Because before, we hid ourselves to die, today we show ourselves to live.