What is Ordinarily Rare?

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This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.

This is Me. Discovering the Extraordinary in ‘The Ordinary’.

All of me is now based on storytelling but it was different before diagnosis as I was busy creating stories.

Writing down these facts, engages my mind to add seasoning to the narrative and I re-experience those moments.

Ordinarily Rare is all about my story on fighting and going through a rare and a set of chronic diseases. It is an expression that connects me with my inner self.

It is a diary of my experiences since

In 2016, I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks.

Glaucoma also accompanied me. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. I faced tremendous issues with my gut, stomach acid, and digestive enzymes. During my journey, I also developed Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Eczema and Blood Pressure.

Ordinarily Rare is about sharing something that patients and their families can read. A non-fiction piece of life about an ordinary human who is trying his best each day for recovery. It talks about self-promises, my mistakes; life lessons, and simultaneously about solutions.

Though the outside world never noticed, my life changed that day, forever.

Before my diagnosis, I tried too hard to become someone I was not. Like the people who follow our customs and practices, I too was in the comparison business. In keeping with our fundamental values, I was taught to tussle with the mind and attempt things out of the box. While this brought me much professional success, I was not prepared to deal with the aftermath of my diagnosis.

Neurological symptoms arise as a result of abnormal functioning of the nervous system. Due to various reasons, one or more parts of my nervous system got altered. I experienced challenges that made maintaining the right body posture and movement difficult.

After diagnosis, I felt like a stranger in my own body. I was surrounded by boundaries of rules, challenges, and perspectives. Everything I knew to date became foreign. My quality of life had drastically changed. None of the automatic processes worked, not even to perform my daily routine. My diagnosis with Isaac’s Syndrome created most problems as it isn’t curable and only manageable.

But who was I now? Was it time to be honest with life expectations and major life-changing decisions? What impact would the changes have on my life?

Throughout my journey, I came face to face with this rare disease

Ordinarily Rare talks about my story of how I began reexamining my life. It eased me to identify and focus on the most essential aspects.

At every stage in life, I emerged even stronger than before, with my takeaways. Many ideologies encouraged me to be optimistic and celebrate my imperfections. Over time I succeeded in transforming my life. The process taught me to heal creatively and finally, discover a more beautiful version of myself.

It is important to self-care, have support systems, and maintain a positive outlook. Finding strength in vulnerability is key.

Today, I am an ordinary man trying to achieve what many might consider extraordinary.

To Conclude

A large population means even rare diseases are not statistically improbable. Information about such rare disorders is still hard to access. This gap leaves many anxious about the impact of rare diseases on their lives and those of their loved ones.

Through Ordinarily Rare, we can share relevant information simply and directly.

My main reason for sharing

It stems from the wish that when I was diagnosed, there had been someone like me out there talking about his experiences.

My journey is an exhaustive history of everything, good and bad that happened post-diagnosis. By sharing my story, I am hoping to reach out to others who may have gone through similar experiences. I wish to compile this knowledge to the benefit of yet others.

The platform can tell you how faith, togetherness, and the beauty of ordinariness can help.

Though it is about my journey, but it’s about you too.

It details my journey from a career as an Investment Banker to life as a rare and chronic patient. It is my battle against painkillers, alien symptoms, and how I clawed my way back.

We are different people; our interpretations may differ. However, I invite you, dear readers, to embrace your own “ordinarily rare”.

Share your thoughts, reactions, and experiences as you feel may be appropriate. Let us together experience and find solace in our truth in the face of adversity. It is a reminder that even amid ordinary lives, there is extraordinary strength waiting to be discovered.

What I strongly know

Though my world seems to toss from one crisis to another, it was hard and continues to be hard – Recovery is worth every bit.

DISCLAIMER

The views expressed above in this article are the author’s own and do not represent any kind of medical advice.

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