Having met a few people with Cerebral Palsy and been taken in by their inner strength and their charming and intellectual way of engaging in conversations, I was excited to meet Siddharth. He was to do an interactive session to celebrate World Cerebral Palsy Day on October 6th.
This blog is my perspective of the experiences I had from the session.
What I did not expect was an emotional moment within me, when I was introduced to him. Did this emotional moment stop here? No.. It hit another level in the next few minutes. He asked for a glass of water and then asked it to be kept on the table next to him. He took the glass and drank it in such a way that my hear went thudding for a few minutes. “Is he going to drop the glass looking by the way he is taking it? I hope he does not spill all the water on his shirt as he is taking it so uncomfortably to his mouth”. Looking back at that moment, it was uncomfortable to me but he was perfectly comfortable with what he was doing and how he was doing it..
As he started the session, tears just welled in my eyes and it still does as I pen this blog. I tried to push it back and was ready to step out of the room if needed, to gather myself. Being a lover of manual writing, I take a notepad and pen with me wherever I go because I don’t want to lose some thoughts that strike me. So I busied myself by writing what he shared and that helped. I guess I now understand that’s what he meant by saying “Engage yourself in physical activities that will help you overcome your emotions.”
As he started sharing his journey with Cerebral Palsy, the challenges and struggles he faced, I could hear a few sounds of “Tsk, Tsk” and that “Ptch, Ptch” from some in the audience. Sounds made as though to convey their feeling of sympathy? of their feeling of “It was not a nice thing for him to face”? or of their feeling of “acho, how sad?” I guess it varied with people, though I did not ask them why they made the sound they made. My ears and eyes were on Siddharth and what he was saying. Their sounds were a bit of a distraction, but that’s part of being in the audience. The one thought that was running in me when I heard the sounds was “He is not looking for sympathy but has learnt to accept himself and move on in life. He has moved on but we are now subjecting ourselves to the pain that we think he may have gone thru. His past has become our present and and that will lead into our own future helplessness and anger. Why oh why, do we do this to ourselves?”
During the short break that we had, I heard a kid in the first row asking “Why does he have his fingers bent all the time?” I am not sure whether he heard it or he heard it and did not respond to that question. A few embarrassed looks from some adults around and some words of explanation to the child, did not stop the question being asked again. How do we explain to anyone that this is what is ‘normal’ for him? His definition of ‘normal’ is ‘being yourself’ and that’s what then he is isn’t it? ‘Being himself’? For each one of us ‘normal’ can be looked at from the perspective of a particular standpoint and anything that is not within that standpoint is ‘not normal’. On the other hand, for someone who then seems ‘not normal’, the stand taken many times is “This is what I am. Learn to accept me as I am.”
It was during the same short break that Siddharth was given a cup of tea. He requested that it be kept on the table. When he took it from the table, I was left with the same feeling that I had when he took the glass of water. But he poised the cup and drank the tea with such aplomb that it was evident that this is a skill that he has practiced many times to master it. It occurred to me that he might have asked the cup of tea to be placed on the table because of a challenge with his eye hand co-ordination (he had mentioned earlier that while his eye looks at what he needs to take, his hand reaches something else); so taking it from the table will be at his pace and will not lead to any mishaps (which may happen if he took it from someone’s hand).
Siddharth was struggling (for want of a better word) to open the zip of his bag to take a few copies of books he had authored to give to people who wanted to buy them. When my friend stepped forward to help, he laughed gently at that gesture, “You are helping because I am struggling. I have learnt to accept others’ help because they want to be a part of my struggle.” The next time I saw him trying to balance his book he was autographing, a pen and a page that was flapping due to the air from the fan above, I muttered to my friend, “Should we help or should we not?” So what if a neuro typical person had had the same balancing struggle, which is very much possible as well. I am sure I would have immediately stepped in to help. So why this question now? Is it because I don’t want my gesture to seem as a sympathetic one? Gosh!!! we make life so much complicated isn’t it?
It could have been a heavy session with many sighs and “OMG” feelings but for his admirable sense of humour – laughing at his struggles with his challenges, which were from himself and from others. While he may say that he was not born with his sense of humour, I think he was. It just manifested itself at the right time and at the right place. The smile on people’s face when the session ended said it all!!
For me personally, everything I have penned in this blogpost is a learning. As I end this bog, the foremost thought is – Here is a person who has had his lot of challenges. The way he has sculpted himself to face these challenges is so inspiring. He may have had his own sense of pain when he saw the challenges that he was facing. Sculpting himself to face the challenges is a choice he made, which may also not have been easy. But he did it and continues the sculpting of himself.
How can each one of us sculpt ourselves, within the range of our limitations? Learn to accept what we were before the sculpting, and being happy with present image of the sculpture that we are; and understand that we are likely to sculpt ourselves further, not because we don’t like the way we are but we need to, to live life objectively. Needless to say, sculpting ourselves with compassion will be the best gift that we can give ourselves!!