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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
Suddenly, miraculous signs began showing up
Last night, I noticed how each particle moved within me
The moment my teacher, HOPE, held me close
He said ‘’does anyone know the boy who lived here?’’
And then he recognized the face he was searching for, mine
His presence felt special and calmed even the insane
As he radiated the words of wisdom
He had everything and wanted nothing
Asked me to stop gathering small figs from random trees
And come out in the open where exist no doors
He said ‘’bury your myths and be fearless of what comes next’’
‘’Just tear away in rage to move your existence out in the sun’’
‘’You are much beyond what you see’’
‘’Because you are blessed, blessed, blessed’’
And disappeared into the community of the unseen
In him, my desire saw a traveling companion
Instantly the barrier of all my logic broke, bringing me to the present
As if an original soul was lit inside me
I saw the clouds of helplessness, consumed
And the silence drew me closer to the music of life
My feet gracefully danced to the tunes of the flute
Deserving what I wanted
I was dead for some time then, I found myself alive now
I cried hard for a while then, I found myself smiling now
The waves stole away the old, leaving behind a new me
I was rewarded with well-being as I surrendered
I had indeed found a great teacher
Many rare disease patients including myself lived meaningful lives before their diagnosis and went through difficult experiences during the pre-to-post-diagnosis phase. My diagnosis with a rare disease, Isaacs’ Syndrome traumatized everyone in my family and the journey since has been quite topsy-turvy. Thinking of the initial days still gives me goosebumps as there was so much confusion for me and my family to wade through. In those days of isolation, we were literally running from one place to another to find whatever little information we could gather, and the challenges were unending.
In several instances, though, all it took was a moment for things to start to change. One day, while I was lying on the hospital bed, my father read a beautiful, inspirational piece aloud from his book, which talks about how two men shared the same hospital room and eventually became friends. One day, the man close to the window started describing the beautiful garden he saw outside and how children played therein their smiling faces and the restful breeze that blew bringing delight and everlasting peace. He continued telling this story for weeks until, one morning, a nurse found that the man in the bed close to the window had peacefully died during his sleep. The roommate missed his friend and the positive talks that had made him ecstatic. He requested the nurse to shift his bed next to the window so that he could relive those moments. To his utter revelation, he found a black wall outside instead of a garden. After enquiring, he discovered that his former roommate was blind and told stories only to feel fulfilled by serving other lives, creating for them an atmosphere that was free of sorrow.
This story left a meaningful impact on me and, on the spur of the moment, I visualized this four-letter word HOPE. My eyes opened to a new dimension and allowed me to take a fresh breath. It made a significant difference by bolstering my feeling of optimism, reaffirming my personal values, and providing a sense of calm in times of chaos. Although it is difficult to express in words how it helped me transform my circumstances, it rekindled the light in me to become healthier. I realized a huge difference in my attitude and the way I perceived, fought back, and overcame even seemingly insurmountable situations, which percolated into improvements in my physical health. I could reduce my daily intake of pills thanks to better gut health and improved vital statistics that, in turn, increased my self-confidence and my energy levels, enabling me to manage my daily routines independently.
Some of the practical outcomes of rekindling hope in my life were:
- A clear purpose: I could work with a clear motive.
- Positive words of affirmation: Repeating these reminded me to stay constructive
- Bright atmosphere: Creating a conducive atmosphere with pleasant lighting, plants, and colors made me feel optimistic.
- Taking small steps towards progress: Setting achievable targets kept me interested and encouraged me to do better each successive day.
- Spending time outdoors: Being in the sun, breathing in the fresh air, and experiencing greenery helped me stay productive mentally.
- Helping my community: Writing articles to create awareness about rare diseases also helped me learn, interact with others in similar situations, and keep myself engaged, besides giving something back to society.
- It is never too late: I kept my token of appreciation certificates in my room as it reminded me that if something is achievable once, it can be achieved again.
- Lessons from a crisis: I watched my favourite actors perform in some of the most inspirational movies like Rocky, Forrest Gump, etc.
In this process, I learned how personal catastrophes – if seen with the eyes of hope – can be accompanied by opportunities. It gave me some useful insights, like how any crisis is just a function of time, that change is inevitable, and that situations don’t always remain the same. A composed mindset helps during tough moments, making it easier to accept failures and live through them.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
