MyStory: 'Living With A Rare Disease Has Taught Me Life Is What You Make Out Of It'

I was diagnosed with Spinal Muscular Atrophy at the age of one. For those who don't know, SMA is the most common inherited fatal disease in infants, with no cure till date and temporary treatments.

It comes in a package deal with a number of mind-numbing bodily conditions – I have scoliosis which makes my organs hug each other a little tight than usual; making them squeeze my lungs and heart that leaves me breathless on occasions, I have dislocated hip-joints that make me scream in pain louder than Adele's highest note and don't even get me started on how lifeless my whole body feels!

Are these good enough reasons to lose hope, snuggle up in a ball and not face the world? Indeed! Did I do that? Absolutely not.

I've lived in my disabled body for 24 years now and all I've learned in these years is that sadness and self-pity is comfort and all the motivational quotes on Pinterest and Instagram mean nothing if you don't power through. And I've given myself no other option!

My life is different, it is rare and so I do things differently, but I do them! I took my first flight in 2007 and realized that being able to travel gives me a feeling of independence even though I am entirely dependent (the irony is painful here!).

I certainly have made peace with things - it's okay that my wheels get to feel the velvety sand on the beaches and not my feet and it's okay that I'm unable to reach the tower-viewer installed on soaring buildings. As long as I get to relish the winds tossing my hair, it's all good.

I believe that it is actually my travelling bug that makes it possible for me to travel in the metro alone on my automatic wheelchair and explore the very small number of accessible places in Delhi. But don't get me wrong! I don't just live for the so-called "wanderlust" within me! I have taken my chair to academic institutions as well and I do own a Master degree in Literature from DU (this is one of the many things the world told me – 'you can't' for)

I'm no heroine, at least not to myself, also I don't glorify the much applauded saying – Don't say 'Why me?', say 'Try me!'. Of course not! I'd rather say – do not try me or try at your own risk!

I've cried through nights thinking of the bad karma which landed me into this situation (the Indian in me waters this thought), I've felt that I am the reason why my family is deprived of the "normal", I've felt hopeless, I've felt useless, and the list goes on. But what I've not felt is that I should give up and I just made sure I keep my suffering aside from my living.

Living with a rare disease has taught me things the hardest way but the most important one has been – life is what you make it!

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