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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’
Ordinarily Rare is all about my story on recovering and fighting a rare and chronic disease. It is an expression that connects me with my inner self. It is about finding solace while living an ordinary life, connecting me to my truth.
It is a diary of my experiences since I was diagnosed with 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. I was also accompanied by Glaucoma. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease.
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 talks 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, I hope, 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. I hope the platform can tell you how faith, togetherness, and the beauty of ordinariness can help.
As 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.
