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Last Updated: Wednesday, 3 December, 2003, 12:36 GMT
'I want my wife and children'

As part of a BBC series on Aids, people living with HIV from around the world tell their own stories in their own words.


Juan
Juan says Sundays are the worst when you are alone

Juan, a Cuban emigre who has lived in the US for 20 years, describes the isolation he has experienced since finding out he had HIV.

I contracted Aids because I had sex with prostitutes. I used to pay them to have sex in hotels and that's how I got infected.

Nine years ago I had tuberculosis and my weight dropped to 90 lbs. I was taken to hospital and after tests I was told I had Aids. From that moment I have been living with the illness.

About two months after I came out of hospital, I just wanted to die. However, with psychiatric help, I improved a lot mentally and I have accepted that I have to live with this illness. There is no other choice and at the moment, there is no cure.

I had psychotherapy for a year because - just imagine - when you fall in love with a woman and then she finds out, she leaves because she's scared.

I had met a girl in a restaurant and we went out a few times and had sex using a condom. But I told her about my illness and when I rang her again she said she didn't want anything more to do with me, she didn't want to risk her life with me.

Not many friends

I have learnt to adapt and just carry on as best I can.

Sometimes I work in a florist's. I make wreaths and garlands.

They call me when there is a lot of work. I worked with them for 12 years before contracting Aids, so they try and help me by giving me some work because the disability allowance we get here is just not enough to live on.

But I don't have that many friends. Since I contracted the disease I have become rather isolated.

People think that when you shake hands with them and then they touch their face or something, they might get something.

In one restaurant, when they found out I had Aids, the owner started serving my food on disposable plates. No more normal plates and cutlery.

In one restaurant, when they found out I had Aids, the owner started serving my food on disposable plates. No more normal plates and cutlery
So I don't have that many friends any more.

Sunday is a very gloomy day for me. When it comes around, I want it to pass quickly because it's such a sad day.

I do enjoy fishing. My friend has a boat and sometimes I go out with him, I find it relaxing. I like going to a show and seeing singers like Julio Iglesias, Emmanuel, Jose Jose, Chayanne, that's relaxing too.

I also enjoy going to a nice restaurant.

You just have to live with this illness.

You've got it, there's no going back. Nothing can be done - you're in God's hands.

My biggest failure

My family doesn't know about my situation. My mother died in 1982 and my father in 1986. At that time my brother was a captain in the army. I wrote to him but he told me he wasn't interested in my life here, that I should respect his ideals.

So I stopped writing to him. For more than 18 years, he doesn't know if I am alive or dead.

Sometimes I don't feel like carrying on, it's so hard to live with this illness.

I would like to be with my wife and family but now I can't.

I have two 18-year-old children who live in New York.

When my wife and I separated, she was pregnant and she left me a letter in our apartment saying she was going to her aunt's in New York because she had had enough of me.

She was almost eight months pregnant when she left for New York and I haven't heard from her since.

It was the biggest failure of my life, not to be able to keep my family.

I just went crazy after that, going to discos and so on and eventually I contracted this illness.

I'm not very sociable any more, I don't go to parties, I don't know if it's because I'm 45 now, but I've lost the zest for life since I got ill.

I do get depressed a lot, thinking about my illness, and that you can die any day and I don't want to die at 45, I'm still young.

I'm definitely not the man I was.

I don't do the things I used to because I'm ill, I recognise that.

This is a terminal illness after all. Your heart isn't in it any more, to do all the lovely things in life that you used to.

Your world just collapses around you.

Thank God, I've still got some fight left in me to carry on.

This interview with Juan was provided by the BBC's Spanish service, www.bbcmundo.com.


The following reflect a balance of the comments we received:

I am not scared and I do have a life to live
Jana, Prague, Czech Rep
I haven't got Aids, I have got methastatic cancer, and my life is similarly lonely. I can't turn up anywhere socially, because people get discomforted and treat me tactfully like "oh, but you should have died some time ago, shouldn't you, oh", "er, still alive, then?" etc. I can't get a job. My family does not care, because merely thinking about me and my illness is unpleasant and scary. Well, I am not scared (it would not help) and I do have a life to live (no reason to give it up before it's taken from me). I guess there are many people like this nowadays.
Jana, Prague, Czech Rep

Juan, I am touched by your story and I hope you find people who are accepting and understand you situation. God bless you.
Annabel Houston, Ottawa, Canada

Don`t lose hope Juan, with the anti-retrovirals and a healthy lifestyle, you can live a normal life. Take good care of yourself and God bless you.
Wambui Kariuki, Oslo, Norway

Juan, keep on breathing, above all you should realise that that's not the end of everything. Use your remaining time to develop your relationship with your creator the all Loving the all Forgiving. God bless you in this trying moment.
Edgar Mwiinga, Lusaka, Zambia

Juan: As you said, you are only 45. You are still young. Never give up hope and try to contact your kids and show them how much you love them.
Daegu, South Korea

Pick yourself up and engage in life fully, to the best of your ability
Steven Hunt, Orlando, FL, USA
Juan, my story has similarities with yours. While I do not have Aids, I could well have had contracted this illness that has devastated so many people. In my younger days (I am 40 now) I shot cocaine and had risky sex with women, specifically prostitutes. I thought I had the illness, but by the grace of God I did not. Since then I have been very, very careful and responsible in my behaviour. We are only human, all too human. Use your challenges to your advantage. Don't close yourself off because of other people's fear and ignorance. If they can't see your value and beauty, that is their lack, not yours.

Pick yourself up and engage in life fully, to the best of your ability. You have much to share. When we live life fully engaged, as decent, generous, empathetic and artistic humans, we attract an abundance of friends. But nothing valuable ever comes without risk. I travel to Miami regularly, as it is my hometown and I love the eclectic culture. Email me back and we can have some cafe con leche on Calle Ocho. But be prepared to put your fears aside and engage in life by putting your best foot forward. You have nothing to lose but the lingering depressive morass you seem too comfortable dwelling in as of late. Don't worry, it happens to all of us - despite evidence that life is inherently liveable and incredible.
Steven Hunt, Orlando, FL, USA

Juan, you are the MAN. A big mind needs positive living, and hope is the fundamental basis of all organic creatures. Juan you learnt the hard way but I am impressed you passed the stage of grief and accepted the condition that you have. Take care of yourself and family and remember, your conscience must be your judge. You managed to contain stigma and discrimination and what can stop you from telling the world how you did it. Respect your conscience and educate those that are being starved of this vital information and your touching story, can change the world. God Bless.
Cleopas Zvidzai, Harare, Zimbabwe

God knows the plans he has for you, to prosper you, never to harm you, plans to give you, a hope and a future. What happened is the past, it's time to move on. Take courage and get your zeal for living back. Just remember, you can make it.
Phillip Banks, Durban, South Africa

Juan: Each one of us come to this world to endure a lot of unexpected things. Aids is no exception. Please understand that even physically healthy people still feel lonely sometimes. I hope you continue your positive outlook towards life and share your lessons with people. I believe that would make your life even more meaningful.
Clift, Memphis, USA

Your life story is inspirational to me
Teldah Mawarire, Harare, Zimbabwe
Juan: Your life story is inspirational to me. It has shown me what life is. And how valuable family is. Please live positively. Keep hope alive. It's what keeps everyone in life alive. Hope.
Teldah Mawarire, Harare, Zimbabwe

Juan, you made a few mistakes but I think they are not too big that you should give up on everything and wait to die. I think you must do whatever you can to go and meet up with your wife and kids and try to make it up with them. I am sure that you have plenty to give to your kids and they will appreciate it one day when they get old. Take care of yourself. RV
Rajeev, India

Hey, well, it's never too late to educate others, never give up hope in your mind. May God bless you. Take care, be brave and have a lot of patience in time to come.
Firuz, Penang, Malaysia

Juan: You learned too late what a family means, however, it's not too late to teach other people what they can do to fight Aids.
K, NY, USA

Don't worry Juan, people are not used to it. Just live your life to the full, mate. Good luck with everything.
Charlie, London, UK

You are in God's hands, and he is with you! God Bless.
Ms Gilyard, USA




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