Never Eighteen...

He turned eighteen two days ago. It was cause for celebration at the centre. He might have been happy about it. Again he might not care. It was hard to say with him. There he stood – a handsome young man with a smile that could light up the world. His shy ‘Anima!!’ and my ‘what, Anima?’ and the ensuing ‘Good Morning Anima!’ was our daily morning ritual. It made me smile but also it made me sad. Would he never come up to me and reach out to shake hands and say this most simple of lines by himself? He was the same with everyone else at the unit. He didn’t know how to be any different. Each of us would correct him every single day and again every morning it would be the same performance. But he knew all of our names and which days we did not come in to the centre. And he always seemed so happy.

How does one celebrate a milestone such as an eighteenth birthday for a child who would never become an adult? I stayed away from the party at the unit. It was not easy to stand and watch something that would break anyone’s heart. My partner is perhaps one of the most courageous characters I have come across. She took him shopping, made his favourite dish and was determined to celebrate. I, on the other hand, hung back and tried to keep the tears down as I thought of all the things this child should be out doing but could never hope to do in this lifetime. 

He would never be able to drive and go places on his own. He could never watch movies on his own and movies are his passion. He would never have friends, girlfriends, secrets, fights, love. He would stay a child of seven or eight. Such a beautiful child fated to never grow up. To me, it seemed like a grotesque parody of eternal youth. How does one get through days when thoughts like this render you incapable of feeling that there is a power in the universe that wants only goodness for all? Where is the God that would take a child and do this to him? Where is the God that would write out a living death sentence for his parents? Where is the God that would create so much beauty and then refuse to instil the spark that makes life all it should be? I do not ask for happiness for every child always but to bestow only enough consciousness to know you are missing something but never enough understanding to work your way out of that lack is a gesture that is cruel beyond belief.

And yet if he himself was always happy, why was I railing against fate? Is it not the ultimate aim of every human being to achieve happiness? He seemed perfectly content and perfectly complete in himself. His bursts of anger were usually because he could not communicate his needs effectively. His lashing out physically was because of his inability to cope. And his need to be taught the same thing over and over again was because of seizures that continued despite medication. He stayed detached from everything around him and continued to smile. And when he heard the strains of a favourite film song, he would sing along in utter enjoyment.

For A’s eighteenth birthday, I wish he gets to hear all the music he wants, I wish he gets to watch his favourite heroes in action every single week, I wish he always keeps that glorious smile…

Fighting the blue

Blue is never just a colour. It is also a state of mind. Some days, despite trying really hard, it’s the only colour you feel deep inside. Yes, one does simply go on with the day but the whiff of sadness never completely passes. The smile lacks lustre. The eyes have the glimmer of unshed tears. The lips soften and tremble often. It is not something that is put on. Sadness lies inside nearly always – happiness is a cultivated habit and a constant work-in-progress. 

Days that leave in their wake a sense of pain are pretty much the norm in my life. It is not a crippling pain or perhaps I never let it cripple me but it is there in the background and life goes on despite it. It is easy to make me slip away from happiness. I hear the story of a friend who is going through perhaps the toughest time in her life. She lives far away and I cannot help beyond lending a ear and attempting to show her a different perspective on the problem she struggles with. Closure will take a long time I suspect. Yes, I know, its not my problem but it is hard to shut out a cry for help or stay detached from some other’s pain especially if the other is a friend.

My son has been difficult for the past three days. Today appears no different. It is perhaps one of the biggest curses of autism to not be able to take a break in routine and then get back seamlessly. He was ill for a few days and so he did not go to the centre. Monday morning saw him determined to make us crazy. Nothing worked – bribes, threats, cajoling – nothing at all. After a few hours of this I had had it. My partner however, is persistent and is the only one I know who will not take a no for an answer even when the going gets incredibly tough. So she kept him till late evening and even managed to get him to do some work. It was the same on Tuesday and Wednesday. I dread the coming day – it is not even 8:30 and already I know he will gives us a hard time today as well. I realize it is part of the disorder but somehow that does not really make it any easier.

It is hard to find causes to not be blue on days where every single thing makes you want to give up trying. I get weary to my very soul – weary of trying to understand a disorder that makes no sense sometimes, weary of stretching myself thin emotionally and financially, weary of trying to keep in check the hurt that comes from neglect by the very friends who used to make my life that much brighter just by being part of it. I am even weary of trying to drum up an appetite when all I do is lose weight anyway. Two hard-earned kilos have slipped away in the last two weeks. Well, to look on the bright side, I get a chance to buy myself some new jeans soon enough!

The day has only started and I will, as always, fight the blue…

On possessiveness...

This morning I woke up thinking of how we define ownership of people. Can you say anyone is truly yours, be it a spouse, a child, a friend? How can people be reduced to the level of objects? Your shoe or your umbrella or your watch is yours because you paid for it .When you hold on tight to a memory, a person or a desire, you alter its shape and you alter the shape of your thoughts and actions. After years of meaningless possessiveness, you realize what you have held on to is not what you thought you originally had. In your efforts to keep something unchanged for yourself, you have permanently destroyed the delicate filigree pattern of the love that once was. What you are left with is a warped pattern far removed from the glorious original which you once coveted.

Last night I had a long online conversation with a young friend. He was unable to let go of a particular relationship. The other had moved on but he hung there with the intensity that is the bane of a few, and which most people cannot handle. How can someone who can impart but a cupful of love not be overwhelmed at the idea of an endless ocean of it coming their way? How can they not feel inadequate at their inability to reciprocate? How can they not run as fast as they can from a fearsome responsibility to take love seriously?  That is what I told him – when you know you cannot hold on, why not let go? The tighter you try to keep someone in, the more they long to get out. And at twenty-five years, he is but a child in my eyes – I don’t know how he can miss out on the excitement of being young , of knowing the whole world is ahead of him, of realizing how very talented he is and how his words convey a rare truth that can move hearts. And yet I know extreme possessiveness is not only relegated to the young, I know of many my age and older who think that the worth of their feelings increase in direct proportion to their ability to be possessive.

It is always better to bind someone to yourself but loosely. The beauty of a love that exists between two people who are free to be themselves far exceeds the limited experience you would get out of curtailed and studied portrayals of affection. Love but let those you love be. If the love is of the truest kind, they will always come back to you. A child allowed to bloom and grow without exhortations to become ‘My Son’ or ‘My Daughter’ will understand the precious gift that you have bestowed him or her with – the gift of finding their way with no fear of not being wholly accepted or loved by their family no matter what happens or what mistakes are made along the way.

In the words of the immortal Gibran - “Love gives naught but itself and takes naught but from itself, Love possesses not nor would it be possessed: For love is sufficient unto love.”

The Gift of Giving

These last few days, I have had my hands full with too many things. S has not been well. Little Mahi is down with fever. Work is ever-increasing. I am up till late trying to write more chapters for the English Literature Textbook that has stories for each individual child in the centre who is doing the academic program. After that I am working on compiling comprehension exercises. Some days I am actually done early but on the days I have extra cooking work as in baking cookies or cakes to send as snacks for the twosome, I run late. By the time I am in bed, I am too wired to sleep. And so it goes. It feels good to be so occupied. It feels even better to know I am doing things that cross boundaries and that I had never imagined I could do. Every single day throws up challenges. Every single day is an exercise in discovering creative solutions. Every single day I am grateful that I am given the strength to get up and try harder. Yes it feels good.

I know that in the eyes of the world I don’t qualify as any kind of a success. I have made no money of my own. It has bothered me occasionally because let’s face it, money is really quite important. But I also know that money alone can never complete you. I may not have what I was once used to, but I feel better about myself on the days that I remember to be grateful. It is not because of the passion for our centre; it is simply because focusing on things other than oneself always broadens your mind to the point where you recognize that whether you make money or not or even if you have lots of tough problems or not is not really the biggest issue in this world. Focusing outside yourself gives you perspective. It also teaches you humility. 

I am humbled in so many ways each day. I see my bubbly partner walk in full of energy and ready to tackle the day armed with nothing more than fierce dedication and a voice every child respects. I know of many times she has spent her one Sunday off taking one of our kids to some event or a movie because their parents were either unable to or uninterested in doing so. She comes in early and is the last to leave. She is up till 2 am working and sending me mails at ungodly hours. All this without taking a single note in payment. She amazes me constantly and I ask myself time and again how she finds this level of passion every single day.

My friend V who works at the centre has a driver who is always ready to help with the children. All our kids get along with him famously. He doesn’t know enough English to communicate with them. He is a simple guy who happens to have a good heart. His face lights up when the kids greet him by name. One day he gave us a pretty painting of horses because he wanted the kids to have something nice to look at. He didn’t have to do it. But he wanted to. Simple goodness always moves me. I feel lucky to witness such acts from people who many never have enough for themselves but always find a way to help another. Praveen’s generosity made him much wealthier in my eyes than a host of people who glibly assure me I have but to ask for help but will not even bother to take fifteen minutes of their time to drop by even after repeated requests. Superficial words are so easy to spout; the truth is generosity does not depend on how much you have – it merely depends on how joyous it makes you to give. Praveen is indeed blessed.

It saddens me to see children around me who have never learnt how much fun it is to give. When I can only see a deepening culture of ‘me first’ or ‘let me just have fun’, I wonder how many years anyone can spend in the pursuit of distractions. I still believe that it is enjoyable to teach children to give. It is one of the most valuable blessings you can bestow on your child. Indeed it is one of the keys to happiness. I know that a child who learns to give and think of another will never ever be weak emotionally and this seeming epidemic of youngsters ending their lives because of low grades or silly lovers’ arguments would be a thing of the past. There is no age limit on learning to give and there is no right time to do it – giving is truly growing.