Finally, I created my blog!
I got an answer to the question, "Why should I start a blog?".
I can’t believe that I did this.
I was stuck with the idea of blogging for a very long time now!
Anyway, I am Dr. Shyamala Peesapati from Namma Ooru Bengaluru.
I know, I can understand if you are finding it difficult to pronounce it. That’s why I am giving you the liberty to call me "Shyamala".
If you find it difficult to pronounce 'Shya-ma-laa', you can call me “the rare world girl”.
Now that’s an easier task I know!
Stop smiling. Hehe!
Let me tell you about my journey so far.
I was a happy-go-cheerful girl until the age of 20.
Plump but a beautiful girl with curly hair and that dentist smile I was, until something happened. This ‘something’ shook my world upside down.
It was around my 21st birthday in 2017. My father was diagnosed with a rare disease called “Granulomatosis with Polyangiitis”. I will simply call it “the deadly demon”.
Now let’s keep the journey of diagnosis for another day.
Now the main intention of this blog post is to give you a brief about my journey as a rare disease advocate.
I graduated in the year 2019 from the prestigious Government Dental College and Research Institute, Bengaluru.
That's not all fair because I lost my loving father to the very same 'deadly demon', 12 days before I could graduate.
Here is the picture of my Graduation Day. I lost my dad only recently back then. Trust me when I say this, walking onto a stage like this, I expressed my heartfelt gratitude to each and every one who made my rare journey possible!
I know that it’s very painful not to have your loving parents watch you fly. But God had another plan for me.
Every pain has a purpose.
Every purpose seeks passion.
Every passion seeks an action to reach that milestone of proficiency.
I got into a job immediately, soon after my graduation to keep myself self-sufficient.
I joined as a resident dentist in a dental clinic that was almost 12kms from my home.
It was a fair job.
Whenever I could squeeze some time between, I remember carrying my 'Dental Pulse' book to study.
In no time I got into the rat race for my All-India Post Graduate Dental Examination. It was in December 2019 (3 months down the line since I graduated)
I went to the exam center from the clinic, it was an 'okay-ish' exam.
To sum it all up in one single word, I qualified for the exam and got a decent rank back then. However, owing to the exorbitant fees that the MDS (Masters of dental surgery) course demands, I took a drop.
I had to give up on my MDS dreams and continue with my job because I could not afford the fees.
That job was fine, but trust me when I say this, God always had different plans for me.
Little did I get used to the clinic that put me at ease, the pandemic happened.
It was March 2020 when the first wave of COVID-19 hit my country India. Yes, you guessed it right, my job as a dentist was at stake.
The entire dental sector and the economy in my country completely crashed. That was the very first time where I strongly regretted being in this profession.
I had to do something to fill my tummy.
I started the job hunt again but there was an announcement of the lockdown!
Boom, that was taken away from my plate too.
This was also the very first time that I regretted not having a job online. This means, that there was no 'work-from-home' option that was possible for me.
For a week or two, I was in my home. Locked down completely.
I remember my mother watching the hike in the number of cases every hour on the television. She was glued to it. I desperately prayed that this pandemic comes to an end soon.
I don't know what happened next. Something happened in my life that suddenly changed my financial position completely.
The Dean of my college had sent a random message to my college WhatsApp group. The message read, 'There is a gross need for doctors in a nearby COVID Care Centre (CCC) (with the address).
Listen to this good thing, the hospital authorities promised a salary. It was almost 3 times my current salary.
I thanked god. What more could I ask for?
However, I had a piece of bad news. I had to leave my home, meaning I had to leave my mother at home for 2-3 months.
Also, since it was a temporary job, I had to stay in the doctor’s quarters which were provided by the hospital. That was considered the safest option keeping the social distancing and my mom in mind too.
This was an extraordinary experience.
I still feel grateful for doing my bits back then. The savings that I have today are the gifts of this wonderful hospital.
I am sure that we could not save every patient who came into the COVID Care Centre. But, I can undoubtedly vouch for the fact that we tried our best.
The seeds for rare disease advocacy were sowed much later. It was during the isolation/quarantine days following my hospital duty. I returned home in August 2020 and as expected, I locked myself again in my room for 2-3 weeks for safety reasons.
This was the best time when boredom was killing me. I never knew back then that one random Instagram-like or a DM reply could get me this far into the world of advocacy.
I only had this random thought in my head that come what may, I have to immortalize my rare father. I didn't know what I would do back then. I just wanted the world to remember my rare father.
Things for me changed in August 2020. I never really knew about the virtual world. Believe me, 100% when I say this. I didn't even know things such as Zoom existed to host virtual interviews. I saw a random post asking people or families that belong to the rare disease community to open up and talk.
Sheepishly, I jumped up on that and wrote to them saying that I was ready to talk or share my story.
So a virtual interview was arranged and that was how I gave my first virtual interview. It was in fact an International Interview.
They were a student-led nonprofit organization for the rare, Shaping Foundations,
New Jersey, U.S.A. Today, I am an Indian ambassador for the very same organization.
Also, I did not have a laptop back then to host virtual interviews. No phone or camera tripod either. The only thing, my best friend back then was my smartphone. It was a Redmi Note 5 Pro mobile phone. I had my Complan jar back then that served me as a tripod.
I started becoming active on Instagram. I hosted my first live interview with a Childs Syndrome Warrior, my friend Jess.
Trust me, I was not at all prepared for it. It was being telecasted live. To my surprise, the response I got from my audience was spellbound. Many people, way beyond my expectations joined me live and a few also reshared my posts.
That very virtual interview opened the gates of advocacy for me.
That was the very day I decided to be the voice for the rare disease community and empower the rare digitally.
After this, post-COVID duty, I got back to my job as a resident dental surgeon in a nearby clinic. My madness about rare diseases did not stop. I then decided to write a book about my journey.
That was how my book “World Will Remember You Dad” was born.
I wrote it all in just 30 days. I want you to trust me with this. This book is my story!
I gifted myself with this book on my 25th birthday. My book was launched on the 23rd of April, 2021. I kid you not when I say this, there was COVID-19 pandemic again!
I was in the very same hospital again serving patients for the second wave of COVID-19 that shook my country, India.
COVID-19 has made me stronger and more resilient. I am glad about that.
Long story short, It was only in the year 2022 April I decided to take things professionally. I started working on my website. Decided to make the random 'rare world' Instagram idea "The Rare World Official".
In this blog, I am only hoping to be the voice for the rare and empower the rare disease community, the digital way!
Even if one person benefits from my blog, I will consider it worthy enough to continue blogging!
In this blogging journey, I have learned a few lessons.
These are the very reasons why I would never want to quit Blogging.
The number one reason is,
Blogging is bound to make an impact on your business.
Secondly, I would really love to create a blog that my parents would be proud of.
I also want to prove that blogging can be a career for the 'rare'.
Lastly, I would never want to die with regrets.
My most favorite regret is, If I don't blog now, I might hate myself later.
Let this blog spread hope to the rare disease warriors/caretakers.
They are fighting a silent battle every day!
Check out my first blog post here!
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Sending you all love,
Dr. Shyamala Peesapati
Founder, The Rare World Official.