Raise the RARE and Rise💛
Updated: Nov 6, 2020
Dr Shyamala Peesapati, 24, is a dentist from Bangalore (Bengaluru, India) whose life was turned upside-down when her biggest inspiration—her father, was diagnosed with granulomatosis with polyangiitis (GPA). Shyamala shares her story in a mix of beautiful poetry and written thoughts as she comes to terms with her father's death and her new life forging forward in rare disease advocacy
"Every pain has a purpose,
Every purpose seeks passion,
And every passion demands an action,
To reach that milestone of proficiency!"
"Starting from the scratch all fresh and raw,
An unfinished diagram is all that I can draw!
For now, filled with haze and dust,
But with determination filled at it's crust!
Not afraid to take the first move,
Someday success is all that it's going to prove!
Remember, it's not going to be a cakewalk,
But someday about you some people are going to talk!
I looked at Dad and took this stand,
Places to go, but for now, I don't really know where I will land"
With these random thoughts flooding my mind I desperately prayed for the world of rare to be kind when I bled these words on the pages of my diary before I could hit the bed. The fearful labyrinth of wavering ideas and dreams haunted me often and just another dream was on its way to steal my sleep.
I hoped to get some sleep when I noticed tears falling from the corner of my eyes.
Tears filled with pain, loss, grief, and uncertainty.
"Uncertainty is the only Certainty.
Impermanence is the only Permanence", I thought!
"Too near to be far,
Poor little eyes were just left with a scar!
An escape route to those overfilled tears,
was finally found when the eye-lashes kissed each other!"
I was tired living a monotonous and an absolutely useless life like that, being labelled as "the cry baby" by almost everyone who knew me. But that's all the story back then! History paves a way for the unseen future mysteries.
I am a dentist, writer, volunteer, blogger, host and a rare disease advocate above all today. My voice is loud enough and the words that are buried under my tongue are screaming out loud to be heard and are finding their way out to reach out to the rare disease community. Desperately wanting to share stories and change the world, one post at a time and one story at a time!
The transition from being a cry baby to the so called ambitious lady was dreadful and incredibly tough! The road to reach here was all so rough. It is all a result of sweat, tears, blood and sleepless nights for a period of three long years :)
The past danced in front of my eyes all at once.
Long story short, my loving father was diagnosed with a rare disease called "granulomatosis with polyangiitis"(GPA) in 2017, a diagnosis which was confirmed on my 21st birthday.
My entire world came crashing down on that day. I still remember how determined daddie was—being on the ventilator with physical restraints still trying to scribble the letter 'H' to wish me—'Happy Birthday'. Those 29 days of struggle to arrive at a diagnosis were horrible! Just horrible! Ask me not about the medical expenses and bills, even to this day I extend my heartfelt gratitude to everyone who contributed for it and made an impact!
Maybe there's a child in every father who must be taken care of with tonnes of love and I am glad to have seen him!
I saw my father cry and fall,
And still he was there lofty and tall.
I enjoyed his second childhood, loved him, cared for him and at times scolded him too!
This went for two long years, and then one fine day, I woke up to realise that I don't have to do all this ever again, my busy world became empty all of a sudden when I lost my loving father in September 2019. He merged with that Almighty and found his peace after proving victorious for two long years living with the deadly demon.
It's not in our hands to live or not, but it's definitely in our hands to give life it's biggest and best shot!
He lived with peace in spite of having blood pricks and scans often, I don't remember a single day when he went to bed without that beautiful smile on his noble face :)
He was always grateful.
It's the gratitude that decides the altitude.
And now I am only carrying his legacy forward, trying to keep him alive way after he is gone.
I will make sure that the world remembers my proud daddie someday, he was an incredible and a strong vasculitis warrior.
Look at me from above and smile daddie.
The world will remember you someday!
I lost 'My World' and I found "The Rare World"
Watch me fail and watch me fly!
For sure, I won't stop from giving life another try :)
My failures might entertain you,
But very soon, you will follow too.
I said this to myself, I smiled at once, wiped my tears and began my journey to aim high once again when I shut my eyes and welcomed the land of sleep, and there, I could just read this.
"So what is it to you..??
When your dreams are bigger than your distractions,
When your thoughts are powerful than your temptations,
When your focus is caged in a labyrinth fashion,
What is this confusing chaos to you?
Just a cakewalk for it feeds on your determination!
Just a little courage, my dear friend.
Take that now, else you might see the end!
When failures question your dignity, please do not bend.
For those beautiful scars, your success will mend!"
Dear Rare Disease Community,
You matter above all❤
Dr Shyamala Peesapati graduated from The Government Dental College and Research Institute, Bangalore/Bengaluru, India in 2019
Written by Dr Shyamala Peesapati
You can follow Shyamala on Instagram www.instagram.com/the_rare_world
If you would like to submit your voice to the RARE Youth Revolution, please email our youth editor, Daisy Marriott: firstname.lastname@example.org