Leave well alone

I am glad that the one ability I possess is that of writing. It ensures that at no time am I friendless. It ensures that the deepest darkest phase of despair will not see me reach for a convenient rope because I sit and put down in black and white what is bothering me and then get on with my life be it ever so hard at that particular moment. Escaping from this world is easier that living with challenges. My escape is writing.

There are days when you wish to vent to someone, anyone really because things get out of hand. Friends come and go or are busy, spouses tend to be occupied with their own issues sometimes, extended family most usually have no clue what is happening in my mind. So my one option is to write. I don’t have to face a busy tone, or a friend interrupted from shopping/partying/ facebooking or a spouse desperately trying not to let on how many problems he is juggling. I just hammer away at my keys till calm descends on me once again.

In an ideal world, you get support from the quarters you expect. The recent article written on me didn’t go down well with some of my friends and family. Apparently my talking about autism and accepting the label instead of denying it is what caused autism in the first place. A friend who has not spoken to me in years because she is busy calls me up the day the article was published to ask me what my son would do if he read those words written by the columnist. I asked her if she was so interested in the child she had seen from babyhood, why had she not even once in the past three years, actually called to find out how he was doing? I then told her if my son ever got to the stage where he could read and understand what was in the column regardless of his reaction to me, I would be the happiest person on earth. She obviously got more upset. It amazes me that people who have no stake or interest in my child’s welfare should choose to tell me whether what I do is right or wrong.

Then I got another call in the night. This time it was to say that the use of the word ‘autism’ is what creates ‘autism’. In other words its alright to call a deaf child deaf or a blind child blind, but if its autism do not talk of it, call it something else and pray. Autism will miraculously disappear. As a mother I was endangering the child by my relentless advocacy to give children with special needs a chance to live productively in society. Why couldn’t I just deal with my child (without labels) and why did I have to work with so many of ‘those’ children so that this label was in the life of my child nearly always? I said that burying my head in the sand was not an option. And praying while doing nothing was also not an option. Again someone who calls but despite having the chance for many years, does nothing to teach the child or engage him in any way has no right to tell anyone what to do. Challenges are one thing. People who are constantly negative and critical are another thing entirely. Having done nothing of value themselves, they seek then to bring down everyone because that is far easier and more satisfying than doing one productive thing in their entire existence.

It is true that everyone has their own path in life. It behoves the rest of the world to leave them to it. If help is needed extend a hand or not , according to your nature but don’t bring down someone who faces an uphill challenge every single day. One day your actions will get to you too – no one is immune from the repercussions of harsh words and selfish intentions. Try and put yourself in the other’s shoes. And if you still don’t get it, understand enough to leave them alone.

Life Lessons from a show

I look at my blog list and see that I have been rather remiss at writing these past few months. Perhaps it is solely due to the fact that I seem to be able to take more turbulent changes with equanimity these days. The reason could be that most of the undesirable elements in my life have cleared out or it could simply be that I have seen such a degree of pain that normal disturbances or even abnormal ones are manageable in this particular state of mind.

The last month saw our little centre achieve an unprecedented level of success with the hosting of our superb exhibition. The children outdid themselves and the response was, to put it mildly, phenomenal. I felt immensely proud of them all and especially of my partner who has the ability to dream those dreams that are beyond my capacity to envision. Our friends (those who took the time to come) and families were so proud. I realized that those who verbally promise support even with their presence are often those who never do make an appearance. I also realize that those who publicly and privately proclaim their desire to aid will be the ones who merely pat us on the back and say “good job!” as though we were a particularly well behaved sort of dog.

Five newspapers carried our story. We had radio presence. TV 9 covered us. The hard work of months was rewarded by the amazement and delight of those who saw the art work on display. We also sold 90 percent of the pieces and got commissions for the young artists. We could not have asked for more. I feel grateful beyond measure as I look back on our impossibly difficult journey.

Every step of my life in the last 14 years has been hard. Most people would not understand that statement in the least. Problems that go away or that you can conveniently forget or buy off are those that do not scar you very long. Those that stay with you change you in ways that could mean a positive improvement or a depressive stance. One thing I have vowed to myself since my last birthday was that from now on I will speak my mind with no thought of diplomacy when I need to make things clear. I have been painfully polite to my detriment in many cases. I have helped beyond my capacity. I have stretched myself thin by being ‘nice’. I have been treated as though I did not matter or as though time spent with me was something that could be squeezed into a schedule most convenient to the squeezer. Being an afterthought in another’s life happens only if you let it happen. No one needs to be cut and shaped to fit into an available slot. No one needs to be too nice. If you believe in who you are, don’t compromise.

The exhibition brought us a lot of recognition and respect. It taught us that no matter how difficult the journey seems, if you are true at heart to what you value, things will work out. We all have a long way to go yet. The kids need more solutions. But as of today we are better poised to provide them with more options. When you serve out of passion, good things come your way. Always remember to cherish yourself and your ideas so that this one life you are gifted with is made worthwhile. Stay true. Be grateful. Learn.

Little joys...

There is so much to be learnt just by going through your ordinary everyday existence. And make no mistake, everyone’s existence, no matter how vaunted, how apparently glamorous, how immune from touchy sticky unsolvable messes they appear to be, is ultimately mundane. There is nothing wrong with ordinary everyday moments. They are what make up life. Your moments of success or pure unadulterated joy are bound to be rare in comparison with the number of ordinary, building-block moments that you will experience in the course of a lifetime. Which is why you need to cherish these ordinary moments. How you live them will be testimony of your true character, the stuff that you are made of.

Why am I prattling on about all of this? Oh just like that. It’s a rainy night. The scent of freshly baked banana cake wafts through the house. I sit typing away feeling a swell of gratitude for the simple things that make me happy. The expression of utter delight on the kids' faces as they enjoy the cake, playing a sweaty game of badminton with S and feeling alive with energy, sitting quietly by myself watching the rain – all of these little pleasures made my day utterly beautiful. 

I feel renewed after a long time. For a while there were moments that kept me sliding down into a well of nothingness where I have had to fight to simply go on. There are days when every single thing you touch seems to go wrong. There are months when no smidgeon of good news reaches your thirsting ears. There are years when you live with vacillating hope of your biggest worry conquering you. This time the new low taught me something I hope I will never forget. There is real steel somewhere inside me and possibly everyone in the world. Maybe you go for a long time without knowing that your breaking point is actually the moment you discover your biggest strength. But once you feel that strength flowing through your veins, you know that no matter what, things will get better someday. Then you let the worries go and take one day at a time. Again.

The simplest way to feel this joy is by observing the moments that make you smile unaffectedly. The belly laugh that makes Appu’s happiness so infectious gets me smiling too. Mahi’s creative hyperbole and S’s seemingly careless signs of affection popping up when I least expect it, all set me smiling when I need it most. So anyone can choose to be happier than they expect they can be when problems weigh them down with unceasing constancy. But it is a habit that has to be cultivated. Its easy to say that man’s natural state of mind is to pursue happiness. How many of us actually believe that? How many of us delve deeper to find out what the happiness entails? How many of us tie happiness to a thing or a person or a lifestyle? Sometimes we are lucky to have what we think we need to be happy but most often we need to seek joy in the little things that fill our ordinary existences.

The fireworks of spectacular joy are sublime to watch. Their lights remain imprinted in our minds and hearts long after the moments pass. Sometimes it is the memory of the fireworks that keeps us going when the nights seem long and unending. But the light of a little lamp too can keep the darkness away as long as we remember to keep it going every single day. Gratitude helps to keep that light alive. The ordinary joys are enough to make one feel blessed despite setbacks. So be happy in little ways everyday. It gives you the strength to deal with whatever is in store for you. And helps you rise again and again...

Monsters...

The room was dark and forbidding. Her breath grew laboured. Her heart beat faster. She cried out loudly. The woman who was dragging her to the room didn’t let go of her hand despite her piteous cries. Pulling her along while muttering in a language that was incomprehensible to the six year old, the woman deposited her in the room and locked the door with not even a backward glance at the terrified face of the child.

She was not trying to be naughty in class. She simply did not know how to sit still. Her body was not her friend. The only time she felt comfortable in her own skin was when she moved. So she would move either her arm or leg or head so that she could cope with the difficulty she faced in sitting unmoving in class. There were so many children in class making some noise or the other. The teacher too made a lot of noise. She simply could not understand what the shouting was about – for her every noise seemed loud and jarring. Sometimes she covered her ears. Sometimes she grew distressed and cried. The other children seemed to think she was funny but not in a nice way. The teachers would grow impatient with her especially after telling her to sit still or be quiet or stop dreaming; not once but a million times a day.

This particular teacher never liked her and she knew it. She tried hard to be nice and obedient but she got so nervous in class that it was too hard for her not to be hyperactive. The more she tried to sit still, the more she moved. The teacher got very annoyed and finally told her to stand up. She shouted at her and made it clear that she found her quite a useless child and a very naughty one too. She then sent her out of the class with a maid as a punishment. The maid was to take her to another block and lock her in a dark room. After an hour of that, perhaps she would understand how important it was to be obedient.

The girl rubbed her arm where the maid had bruised it with her heavy-handed dragging. She couldn’t see much and she was so scared of the dark. At home she slept with a little light on otherwise the monsters would come creeping out of all the shadows. Everyday her father would look under the bed and behind the bathroom door for monsters before tucking her in. Everyone knew that monsters were afraid of light. What could she do now? She cowered in the corner waiting in helpless fear for the monsters to arrive.

Huddled and rocking with tears streaming down her face, she waited. In a while footsteps could be heard along with rough voices. She shrunk herself into a smaller ball hoping that they would not see her and that the teacher would come and get her. But the door opened and two men walked in. One man was the 'uncle' at the gate and the other was the teacher who made the kids do exercises. Why were they here? She tried to get up but they came closer and the teacher started yelling.

“Naughty girls deserve to be punished. Why can’t you listen to your class teacher? Only in first grade and look at your attitude! I will teach you how to obey!”

The men took turns in disciplining her. She cried till her eyes hurt. Her dress got dirty. Her skin was blotched and bruised from their hands on her. Her legs hurt and the part where the pee came from, that hurt worst of all. She cried some more, she screamed incoherently, she promised to be a good girl if only they would stop, please stop….

On Envy...

I have never felt the need to envy anyone for most of my life. Yes we grew up without any great luxury and while we had enough and more love showered on us when we were growing up, we never had the kind of money that meant even a rare outing or a movie or that book I so wanted to read but was too scared to ask for. It didn’t really matter at the time because as kids we were very accommodating. We found simple ways to keep ourselves entertained and I believe all those hours writing and performing little plays with my siblings was the root of my creativity. We could make magical landscapes out of nothing more than an old sari or an inflatable mattress. The real joy of our childhood was the truth that we needed no other in our world and we were usually happy.

As an adult I have never felt the need to envy anyone the usual things that are the object of envy. I have never coveted another’s wealth, lifestyle or ability to make money. I have also not envied anyone else’s eyes or hair or figure or confidence. I have of course wanted things I couldn’t have but it never hurt me that another had them. This lack of envy was not because I was a spiritually superior being but rather because it simply did not matter to me. 

But today and every day I do envy most of those around me one thing – the luxury of being completely ignorant about the terrors parents of children with difficulties like me face. How easy it would have been had I not have had to worry about my child! Nothing matters as much as the desire to secure his life. How will I do that? When will there be enough resources at hand for me to ensure that at least monetarily he will not suffer? When will a day come that I don’t have to see how much this boy struggles? Why is there not more clarity as to how I can help him? Is the way we have embarked on, the only way or is it the toughest?

The feeling of holding on to envy does not sit well with me. I am by no means saying that there are none who envy me. Many do. Some do so unreasonably and slip into a cruel mode of trying to break my spirit so they can see me fail. Even that ceased to matter a long time back. I am also not saying that no one else has problems or that they have nothing to worry about. The stories as visible from outside are always far away from the truth of the reality that seethes inside. All I am saying is that for the first time in my life, I envy people something with a fierce intensity. It is a useless emotion of course. But it also happens to be distressingly human. It is with disappointment that I observe the envy in myself. It is one more thing I have to outgrow.

Envy does no one any good – least of all my child. I try to look at his handsome face with hope. I want to believe that all will be well. But that would be delusion of the highest sort. He will always have problems. People will cheat him. There is no way this innocent soul will survive in the rough world that awaits him. But we have to go on somehow. It is a blessing to have innocence, to have a pure heart, to shine with the radiance of unadulterated love. I hope these strengths will protect him as he grows up. I hope he never has reason to envy anyone their ‘normalcy’.