My Story – Living with Cerebral Palsy
I was born with Cerebral Palsy, spastic diplegia. But this was unknown until I started taking my first steps. In this type of CP, I have stiffness in my muscles and it affects my arms as well. I have difficulty walking, the tightness in my hips and leg muscles causes my legs to pull together, turn inwards and cross at the knees, which is also known as scissoring. Walking in this way, to me, was normal and whilst growing up I adapted the best I could to continue living my life.
What is it like living with Cerebral Palsy? A condition that stays with you for a lifetime. Well, let’s see… it’s not easy. I would say, it’s actually very challenging!
Just like everyone else I went to a normal school. Unfortunately, forty -five years ago there was no support or facilities available for CP patients and their families. But school is a part of my life I try not to think about, talk about and definitely not one of my best memories.
I was different, and I stood out like a sore thumb when I walked! Nursery and Infants school was fine. I was very young, oblivious to my surroundings, reality and people’s expressions. Secondary school, well this was a life changer. I had grown up. I started understanding my surroundings, reality had kicked in and I saw people’s expressions through my eyes. And at times I wished the ground would just open up and swallow me.
This is when I got to understand how nasty people could really be. The continuous bullying, the never-ending name calling, being pushed and shoved – it was horrible.
People often say to me “you should have fought back.” But it’s so easy to advice this to someone when you have not fully experienced their life. You are strong and fit, able to fight back. I am disabled, unable to manage the balance of my own body and scared that when confronted I would be pushed and shoved, fall over and hurt myself. It only takes a little push for me to lose my balance and fall over. So, I learned to walk away with pain and tears. For me it was the easiest thing to do. Listening to name-callings like ‘bendy legs’, ‘crippled legs’, and ‘here comes the walking crippled’, has scarred me for life and left me mentally disturbed as well.
College and University was no easy either. I was judged for the way I walked. Umm, what’s that saying? Oh, yes – ‘Never judge a book by its cover!’ Well, all I can say is a person with a disability can be just a good friend as a non-disabled person can be. In-fact I would say a much better and understanding friend because of their past experiences.
I don’t have a lot of friends in my life. But I do know that the friends I do have in my life are friends forever. Because they love me, respect me and accept me for who I am, a person with a disability. Not ashamed to be seen with me, not ashamed to introduce me to their friends. These friends who will stand up for me and fight with me, cry with me during my bad times and laugh with me in my good times. You know who you are. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Anyways, let’s talk about the other factors that affect me as a disabled person… Things you would not even think off.
I’ll start off with clothes. Thick materials and the style of clothing all have a knock-on effect with the way I walk. The type of footwear plays a very important role in my life because they aid my walking. I would love to just walk into a shop and choose any style of shoes, boots and sandals to go with my clothes, but I can’t. Having to wake up three hours early to get to a morning appointment. I wish I could just turn off my alarm clock, stretch my arms and get out of bed. Instead I have to spend a good length of time exercising to help me get out of bed. Tiredness and fatigue – it’s not easy walking with a scissoring gate. It drains me effortlessly. I used to get people telling me “Oh I’m tired as well, I’ve been working all day and I have to go home and cook and clean.” Do you know how difficult this is for me? Working 9-5pm, every day, feeling very tired and exhausted to the point where my legs turn into jelly but I still have to go home, cook and clean as well. Why, I hear you say? Why do we all work? To live a comfortable life. I require extra tools and equipment to help me to complete certain tasks.
Honestly, the questions I get asked sometimes makes me wonder how a person thinks!
These are just some of the things that affect me. Seriously if I was to mention everything in this post, I could write an autobiography on the life of Anjela Bhachu and have a few series of books published. Who knows may be one day…
I want people to understand the difficulties and challenges disabled people are faced with in their daily life, but yet they’re determined and passionate to live a good, comfortable and happy life. The amount of extra time and effort we put in to achieving our goals. But yet we do not complain, smile and get on with life the best we.
I want to tell every one that Cerebral Palsy is a condition, it’s not a disease, you can’t catch it! We too are humans with a heart, eyes and ears. We can see your expressions and hear your comments. Yes, we all our different and unique in our own ways. We wish we could have a normal life, one that is not challenging from the moment we wake up. But we are who we are and we stand tall and united together.
Cerebral Palsy has made me the person I am today and too be honest it’s taken me a long time to accept my disability and to be where I am now. I am proud of who I am and what I have achieved. But I have not got this far on my own. Without the help of my family (my mum, dad, brother and husband and not forgetting my little furbaby Ginger), I would not have reached so far in my journey without you all. So, from the bottom of my heart I thank you all x