By the age of 4, everything was alright, but my parents were waiting for that day when they can see their daughter walking. But they lost their patience and took me to the AIIMS to know the reason, why I didn’t take a single step, but with no proper response, they returned. After noticing my parent’s condition our landlord suggested my dad take me to the Chandigarh hospital. My parents broke down when the doctor uttered “apki beti kabhi chal nahi paegi”.
I have a rare, non-curable genetic disorder called Spinal Muscular Allotropy. There are five types of this disease, the one which I’ve is SMA2. To describe this disease in easy language for you all, I would say my genes don’t have the motor neuron which is responsible for transmitting the signal from the brain to the muscle, and as a result of this, I can’t walk. In this disease, over time the physical strength of the affected person decreases, and the same has happened to me. I have become completely bedridden! I lay the whole day straight on my bed and this is how life goes on. Before 2020, I used to sit in my wheelchair. But since June 2020, my body was in unbearable pain and yes now I’ve become completely bedridden! I lost the ability to sit even in my wheelchair.
What is Life?
Well! Living in the moment and seizing that moment is how I would define life. I have lost a lot of things. I wasn’t given the ability to walk, however, I was happy with the ability to sit. But I have lost that too. So I cherish those 15 years, where at least I had that sitting ability. All those memories of 15 years keep me going, and to be honest I still have a lot! I’m grateful for that. There is no smartness in being sad over the things I have lost. I live in the present and enjoy that and that matters the most!
There are days when I don’t feel like anything and all I want is to disappear. But remembering that there are people like me and for the sake of them I have to do what I do is what keeps me going! Although, I will not forget the two strongest pillars of my life, my mom and dad. I’m nothing without them. If I’m here, all the credit goes to them for not giving up on me. They are the ultimate source of my strength.
My journey has been a rollercoaster!
When I became bedridden, I felt like these four walls have caged me for a lifetime but deep inside I knew that I’m a free mind and a free soul. I don’t give these four walls the power to catch me. I promised myself that I will fly high with my flaws. I didn’t choose this life, this life has chosen me. I love writing and my passion for writing lead me to choose a career as a content writer. I am a 12th science student and along with that, I love freelancing. I am proud to be who I am, this disease is not my weakness this is my pride! My strength! Hearing “Your daughter wouldn’t be able to walk because of this disease” from the doctor, and being rejected by a high reputable school because I’m a differently-abled person, to recording a podcast and inspiring millions! I think I’ve made it! And I’ll make bigger things happen soon.
Coming to what discourages me, it is not something like what discourages me but this is something I don’t like! I live in a world that tends to celebrate sameness and likes to label unique people as crippled, handicapped, disabled, etc. and I can’t understand the reason for this. We are just different, not bad, not abnormal, just different! I believe disability is a myth. With our abilities, we are capable of achieving anything and everything that we want!
Life is tough, it can never be easy! God has his own plans for me. If he took my walking & sitting ability, I trust him, that he is going to give me something better. After all, I am his special child!
Love yourself first! I’ll repeat love yourself first! Be kind to yourself! The only person who matters the most in your life is YOU! Enjoy your own company! The most important and my favorite one! Live in the moment, enjoy every moment to the fullest because it won’t come back, you’ll just have those memories. These little moments give us big memories! Enjoy them!