Living through Uncertainty

March 29, 2016 , by DREAMS, 1 Comment

It can be difficult at times to admit that you are scared. In fact, scared is the last thing you want to

be. You want to be strong, happy, excited, or anything except scared. But, I am. I admit that I am

scared when I think about the future for my sister, for my family, and for me. If I had a choice, I

would never want to think about the uncertainty that looms ahead of all of us. This need to think

about the uncertain future is something that comes from the fact that my little sister, Ambu has

autism, a developmental disorder mostly characterized through difficulties in social interaction,

verbal and nonverbal communication and repetitive behaviours.

When Ambu was first diagnosed, no one in our family had any idea what Autism was. We only knew that it was incurable, and that Ambu has it. The vast resources of the internet that is available to us now, was also not as accessible back then. So, what could we do? More specifically, what could my parents do? They survived on hope. Each hospital visit, or temple visit was with the hope that my sister would be cured. All the alternatives like shamans, traditional healers – which they knew wasn’t going to work – were carried out because they hoped.

As a kid it was very difficult for me to understand what was happening around me. For me, the way Ambu behaved was my normal. Her screaming, or her laughing was just a part of my life, so it would surprise me when my friends or my cousins would be scared of her. That surprise eventually would turn into anger and confusion, and would culminate into a big crying session. However, through all that confusion, I never wished for my sister to be cured. I did not see anything wrong with her, and was adamant on her being perfect the way she was. In light of my steadfast view towards my sister, my parents’ hospital visits, temple visits seemed almost futile to me. They were hoping for Ambu to be cured, but she did not even need to be cured!

I often think about what led me to have that resolution when I was kid. The difference between now and then is that, back then, I was not aware of of the uncertainty that the future held for us. Future only extended up to tomorrow, and that too was limited to school, homework and playtime. My parents on the other hand had to deal with that uncertainty from the very start, and maybe that is why they choose to examine every possibility. Turning that uncertainty into some kind of certainty was what they were trying to do as they went from one doctor to another. The hope was to cure my sister, and in doing so give some kind of certainty to her future and to our future as well.

But, the harsh truth is that, at this point of time, that certainty is just not available to us. We all continue to live in a constant fear of “what if?”. What if we are not able to provide her with the care she needs? What if we were to be gone, who will look after her? Awareness of our own mortality hits us, hits me hard as we try to answer these questions about the future. As difficult as it is for us to talk about these things, we try, still clinging onto a hope. Maybe someday after we have exhausted all our tears and our fears, we will finally get there. Until then, we continue to seek happiness in the little things she does; in her beautiful smile, in the way her face lights up when we play teri ore (her favourite song), and in the way she calls our names. Despite the fear, we continue to live.