Things Left Unsaid: Experiencing CP

January 17, 2016 , by Samridhi Goyal, Leave your thoughts
I walked at the age of three after tough treatment and then I went to live with my parents. I went to school and dad always told me that it was one of the greatest gut wrenching moments of his life to see his little girl walk away from him fearing that I might not be able to navigate around.

After much deliberation and a lot of tears, I am up with it. A film released last March — Margarita With A Straw — talking about a girl Laila who suffers from Cerebral Palsy. The movie depicts how she faces her struggles and the sense she makes out of the prejudices that prevail in the society.

Why am I writing about this? For I too have cerebral palsy and am a much milder version than Laila who is confined to a wheelchair. But I am not. To make it easier for a common man, it is the same condition that Jhamak Kumari Ghimire, the author of Jeevan Phul Ki Kada, has. Her condition though is highly elevated and her difficulties climb another level.

The Problem
Cerebral palsy, often termed as CP, basically occurs when certain parts of the brain affecting speech and other functions are deprived of oxygen leading to motor control and other issues. It stems from the abnormal development or damage to the parts of the brain that control movement, balance, and posture. Most often the problems occur during pregnancy; however, they may also occur during childbirth, or shortly after birth.

How did it effect me? Well for once I could not even sit up by the time other children of my age were walking, running around and doing normal activities. That was the time when my grandparents realised that something was wrong with me and took me to the paediatrician.

Fortunately, I was then in India where lot of spastic societies and other facilities are available. The paediantrician immediately put me on rigorous physiotherapy and had me wear special shoes and braces to help correct my deformities in the foot. I couldn’t straighten my hands and all credit to my mother for her patience with training me to use my hands properly.

I walked at the age of three after tough treatment and then I went to live with my parents. I went to school and dad always told me that it was one of the greatest gut wrenching moments of his life to see his little girl walk away from him fearing that I might not be able to navigate around. Yes, you will be hearing a lot about my parents without whom I am nothing.

  Flirting with CP
Unlike other kids, I loved studying when I began by school in Bhutan. Studying made me forget that once I go back home I have to bend over a table and practice picking up my mother’s keys to help build strength in my back. Yes I do continuous physiotherapy for six months and do I like it today? Not really. But I have conditioned my brain to believe that it is a part of my life. As a kid I always ran away crying from my therapists far too many times.

I had the best childhood, thanks largely to my parents. They instilled in me a love of reading, a fascination of colours, sense of curiosity that turned the house upside down trying to figure out the mystery behind how each little thing worked. One of my favourite memories to this day is braiding garlands with mom on weekends. I still braid garlands a lot of times in her memory for giving up so much for me. I was a typical hurricane who could never sit still at school and had to do every possible activity from morning assemblies to debates, elocutions or extempore.

As for games, I had an exhilarating experience of running marathon in Grade VII though I did not attain any position. I played gully cricket with the boys all throughout Grade X scandalizing those around.

Photo: Lari Telaranta    
A Positive Response
How was I treated at school? Very well. Some of it had to come from the fact that I was school perfect and had a hand in every pie. But it also came from the wonderful people who I call friends. They have been my sole strength and support in many a difficult times. They are those stars that I might not see every day but they do shine. My teachers pushed me, cajoled me and brought the best out in me.

Despite my extrovert attitude, there is one thing that nobody can claim. Very few people actually know me. I talk but you will never be able to peel down the various layers and masks that I may have created for I fear being judged and shunned .. believe me that has happened far too many times.

Reflecting Margarita With A Straw
After I saw the movie, one thing that struck me was that people suffering from CP are as human as others, putting us on a pedestal is not what we desire. We make mistakes just like the rest of you and have our own fears and insecurities. The other thing that struck me is the way Margarita is received by people in her surrounding. Similar to her, as I grew older people’s point of view began to change, they pitied me and looked down upon me which I really do not need.

The issues that they have regarding my posture or the way I move is solely in their heads and if they cannot accept it then that is purely their fault, not mine. There are issues such as laziness, illiteracy and others which I might not have pointed out in loud and clear tones. But if provoked enough I can definitely do that and believe me I can be a bitch about it.

The biggest issue raised by the movie is how Margarita, a disabled girl, explores a female desire and sexual drive. Her struggle in coping with the need for a physical or romantic companionship is an eye-opener. In fact a devastating one because its something that ordinary people are unaware of. Now, have I struggled with it? Yes, I am paranoid about my physical space but I do not bite (pun not intended).

I do crave privacy like any other normal person which is a difficult concept for some of my family to understand. You do not need to desexualize us for our needs are as normal as the next person. There is no need to tell us what we can or cannot do, we know our bodies better than you do. We have lived with it for years.

What’s the intent?
Maybe a little acceptance in this so called civilized world, perhaps a little understanding from my community of Marwaris that holds girls to unacceptable standards of perfection if they are to get married. Maybe a slap on the face to many of those who have told me to get married to a blind person or a mentally retarded one because I have an issue. If my husband cannot see me or I cannot even have a decent conversation with my husband at the end of the day what is the need?
Where do I hope to take this?
I am extremely grateful to my parents who gave me the best medication possible and instilled in me a feeling of self-esteem and the biggest gift of all, education that anyone can ever hope for. You are loved more than you will ever know Mumma-Papa. In you lies my strength. On another note this year, I hope to get into grad school and look for better opportunities. And yes I’ve started sketching and painting again after years and taking elementary Italian lessons. Just a few of the things I hope to do.
Words by Samriddhi Goyal.
Follow Samriddhi on Twitter here.
Read more by Samriddhi here.
Photos by Lari Telaranta.
Follow Lari on Instagram here.

  • unsaid_baner

Tags: , , ,

Categorised in: Your Say

Leave a Reply

Connect with:

Your email address will not be published. Required fields are marked *



You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>