SEEKING NEVERLAND (Does hope need always be true?)
- Part 1 -

Czadanda Saint *

29th International AIDS Candlelight Memorial day by MNP+ in May 2012 :: Pix - Banti Phurailatpam

HIV/ AIDS rivals poverty and exceed war as a threat of death of millions of children in the developing world.
An estimated 98 million young people (aged 15-24) are living with HIV today.
Each day, nearly 6000 million are infected, as well as 1800 babies contract the virus from their mothers during pregnancy, birth or through breast feeding.
15 million children worldwide have lost one or both parents to AIDS.
Every 14 seconds, another parent dies of AIDS, leaving behind an orphaned child.
Every hour, around 40 children die as a result of AIDS.
Less than 10% of the children who have been orphaned or made vulnerable by AIDS receive public support or services. Less than 5% of children in need have access to life saving anti-retroviral treatment (ART).
Sources- Avert, Save the Children, UNICEF, UNAIDS, WHO.

PREFACE

Many of us are familiar with the story of Peter Pan, the boy who refuses to grow up, and his many adventures at Neverland. J. M. Barrie, the creator of Peter Pan, explained that Neverland is a world found in the minds of the children, he further explained that the map of a child's mind would resemble the map of Neverland. It is also considered a place where there is no passage of time or rather 'time froze to the children as soon as they get into Neverland'.

And since then, Neverland is often used as a metaphor for eternal childhood, immortality and escapism. It can also be said that the concept of Neverland is to allow us to have a peek in the minds of the children and grasp their idea of a happy life, and their interpretation of life itself.

The following paper attempts a brief take on the children living with HIV/ AIDS. It can also be divided into three parts, or rather it can be said that it is a collection of three short essays, viz., ECHOES OF HOPE, COMING OUT OF THE SHADOWS and DOES HOPE NEED ALWAYS BE TRUE? The underlying theme of all the three parts is hope. The first part, ECHOES OF HOPE, reaffirms the fact that hope is not lost for such children and they can still afford to dream on, for a better life.

And all that we need to do is to give them a chance. The second part, COMING OUT OF THE SHADOWS, focus on the need of having psycho-social support and care system for such children. And the third part, DOES HOPE NEED ALWAYS BE TRUE?, to demonstrate this need, gives a short illustration of two of the successful support systems initiated in Kenya, Uganda and Zambia.

Above all, it can be said that the following paper demonstrates the impact and reach of the long, cold hands of HIV/ AIDS. Not too long ago, AIDS was considered only as a disease of the 'adults' or the 'grown-ups', and children were considered as immune to this disease. However, with the turn of the century, there has been a growing realisation that even the children are not spared by this virus, and in many of the cases, children turn out to be the worst victims. With the growing number of the AIDS orphans, comprehension dawned on the people that, even the orphans who are not infected, are also affected as their families are torn to pieces by AIDS.

And with this realisation, there was recognised this urgent need to halt this epidemic from consuming the pillars of tomorrow. But for the children who are already infected and affected, nothing much remains for them, except hope. In such cases, hope seems to be the best medicine. We have to instil hope in them. We have to give them hope, maybe not of a beautiful tomorrow, but the hope that at least a tomorrow is there. And we have to make them believe that even if they have been forlorn, forsaken and forgotten; they still have access to one place- Neverland.

ECHOES OF HOPE

Life is a story of hope… as long as there is hope of the tomorrow remains, there's still life. The hope of seeing the morning rays of sunshine. The hope brought by the smell of a fresh new day. The hope of going somewhere. The hope of doing something new. Of doing what we want. Living out our dreams. Fulfilling our aspirations. Exploring the twists and turns of life. The hope which keeps us alive when we are travelling in a darkened corridor of life. The hope that somewhere along the way, one day, our sun will also shine. Because, life is all about climbing the ladder of hope. And hope is reason enough of why we live for… It's difficult to imagine a life without hope. Though some may say, hope is only about the expectations of what will happen; of the future and the tomorrow. It is true that the thought of what tomorrow may bring gives us something to smile for, to live for. But there are people also, who go on living their lives without much to hope for. For such people, thinking about the tomorrow is just like waiting for the darkness to consume them.

For them, hoping about a better tomorrow has just become staring down at an abyss. But life goes on. Time doesn't wait just for them, or for their better days to show up. And willingly or not, they have to move along with the time. They can't hide in their past and wait for the black clouds to pass over their future. And they do move on, continue living on their lives. But their lives are a monotonous conundrum, resembling a symphony of broken dreams and surrounding despair. And caught in a seemingly endless loop of misery, there seem to be no escape. And with no escape, the meaning of their existence seems to be lost.

There are millions and millions of children worldwide, who are orphaned. Their childhood years are filled with a certain void, as the love, care and support of parents is deprived of them. And moreover, most of them have to grow up by understanding the curse of poverty. How they face the trials and the tribulations of life, with hardly anyone to fall back upon, is something worth pondering on. It's hard to imagine how they cope up with their lives, continue on living without any support base and without anything much to look forward to. It's very hard, even to imagine.

However, it's even harder to imagine the lives of those children who are not only orphans, but living and growing up with HIV/ AIDS as their looming guardian. What does life mean for them? It's difficult enough growing up without parents. But growing up without parents (in poverty) with the constant fear, presence and the stigma of HIV/ AIDS is life at one of its extreme ends. The question for them is no longer of living life. But it is about surviving life. Are they born, just to die?

Two brothers, Tomba and Bungo, aged about 20 and 17 lived by themselves. Bungo died about a month back. Both their parents succumbed to AIDS more than ten years ago. And after the death of their old aged grandmother about five years ago, they were left to fend off by themselves. Bungo had tested HIV positive from his birth and was on anti-retroviral treatment. However, after the death of his grandmother, he had 'neglected' taking his own medicines. Thus, his condition deteriorated, leading to his untimely yet inevitable demise.

And recently, Tomba has also been tested HIV positive, who was hitherto virus free. Both of them were regularly ostracized for not taking proper care of themselves. They had 'refused' to go to school, Tomba is already a hardened drug addict and it is not so sure how he had pick up the HIV virus. They hardly had friends since the death of their parents.

And when they do started making friends, their friend circle was limited to the social outcasts, meaning thereby the older drug addicts, who will introduce them to the world of drugs, sex and whatever that lies in between. Already shunned, their everyday lives became only hazy memories of drowning themselves with little blue pills and the 'Peacock' smokes. Even their beds told a tale of its own.

Little torn crumpled pieces of bed sheets scattered around the room, with a strong pungent smell of fresh paint and glue, they were sniffing their lives away, every day. Nobody cared. And nobody mattered. Such was the life of the two brothers for the last five years till the death of Bungo about a month back. And now, Tomba has to continue this journey alone… Foraying further into the world of half-light and half-shadows.

The impact of HIV/ AIDS extends well beyond the statistics. It brings about diverse social, emotional and psychological problems as well. Apart from having no real 'home' or education, facing health problems and malnutrition, they have to cope with psychological trauma, discrimination and low self-esteem also. For them, every day is a battleground, where they have to fight against fate, not to live life, but to survive life. They also have to fight for their rights, not only for being human; but for the right to be human.

No wonder, no wonder!!!

But it is definitely a wonder that Bungo lived till he was 17!!!

Whatever has happened, whatever is happening now with these children may be very unfair. From their birth, they are suffering for no faults of their own: as if they were destined to live and die in misery. But this point is of little relevance now. The point should be that they exist: that they are alive and living. And this should be reason enough to do something for them. Of course, there are great difficulties in the path.

And even hoping for a better tomorrow for them as of now, is just like looking forward to a long, dark and winding labyrinth ahead. But at least, a way is there. And also the fact that they just don't drop down and die is enough to suggest that there is light at the end of the tunnel. They do deserve a chance to break free from the shackles, which are binding them from their birth. Whatever the future may hold, they do need a chance just to live life, and not just to survive.

They do need a chance to give wings to their dreams, and not just think of the nightmares, happening every day. After all, the very point of our lives is to live, not to wait for death. Even though, we all know that we are all going to die, one day or the other.

To be continued...