Read time 6 minutes
This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.
This is my story of finding the light of Hope despite the darkness around.
Suddenly, miraculous signs started to show up,
Last night, each particle started moving within me,
I realized my teacher, HOPE, had held me close,
He asked ‘’does anyone know the boy who lived here?’’
Then recognized the face he was searching for, was mine,
His presence felt special and calmed the insane.
It felt like he had everything and wanted nothing.
He radiated some words of wisdom,
Asked me to stop gathering small figs from random trees,
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’’,
Come out in the open where there are no doors.
‘’You have much beyond what you feel’’,
‘’You’re blessed, blessed, blessed’’.
Saying just a few, he disappeared into the community of the unseen,
But in him, my desire saw a traveling companion.
I heard a spontaneous break in the barrier of all my logic, bringing me to the present,
As if the Ray of Hope lit inside me.
I felt his touch and the clouds of helplessness, consumed me,
The warmth of silence drew me closer to the music of life,
My feet started to dance to the tunes of the flute,
Deserving what I wanted.
At once I found myself alive,
I was crying till then, yet found myself smiling now,
The waves of Hope stole away the old, leaving behind a new me.
I saw the rewards of true surrender in him,
I indeed found a great teacher.
People high in hope have a great quality of life, self-esteem, and a sense of purpose. They are way stronger and healthier.
Many rare disease patients including myself lived much meaningful lives before their diagnosis.
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.
There is a constant shift in our identities and experiences. But I had no clue that the world would change for me. Thinking about those days still gives me goosebumps.
Trust me, the impact of living with a rare disease goes much beyond only health:
Sitting on my bed, packets of pills stacked up nearby, every day revolved around managing my chronic symptoms. Despite the support of my Neurologist, I struggled to see a way forward. Though my medicines helped me function to an extent, I am worried and running out of options in the long term. No option or solution keeps me stable for long.
It felt like I lost myself.
Being entirely human myself, I found myself thinking of my life up to that moment. I struggled to come to terms with my present. It seemed to belong to an entirely different existence compared to my past. There was much confusion in the air for everyone to wade through. We ran from one corner to another searching for information. Those were days of isolation.
But it’s never over till it gets over.
One of the days during hospitalization, my father read a beautiful piece aloud from his book. The story was about how two men. They shared the same hospital room and eventually became friends.
One day, the man who lay close to the window started describing a beautiful garden he saw outside his window. He could only see happiness. The way children played, their smiling faces, and the restful breeze were peaceful.
He continued telling different stories for weeks together. Both the friends laughed and thoroughly enjoyed.
One morning, a nurse found that the man who lay close to the window had peacefully died during his sleep. It was shocking and extremely sad news for his roommate. The roommate missed his friend and all the positive vibes. His friend made the atmosphere so ecstatic.
After a couple of days, he requested the nurse to shift his bed next to the window so that he could relive the memories.
To his utter revelation, he found a black wall outside instead of a garden.
After enquiring, he discovered that his former roommate was blind. He only told stories to feel fulfilled by serving other lives. He was a man who sought good in every situation. He was upbeat. He had a positive outlook on life that helped find solutions to problems.
All in all, he was optimistic and full of hope.
This story left a meaningful impact on me, and, on that 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. It reaffirmed my values and provided a sense of calm in those times of chaos.
Although it is difficult to express in words how the story helped me. It transformed something that rekindled the light of hope to become healthier. Since then, I realized a huge difference in the way I perceive things.
Here are some practical ways that helped me rekindle hope in despair:
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The first step was engaging myself in self-care:
Though it might sound selfish to some. However, self-care plays a crucial part in life. The practice of physical, mental, emotional, and spiritual care promotes health and wellness.
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I Chanted and repeated some positive affirmations:
It’s a technique that kept me in a constructive space and generated hope. Over time I realized that it gave me a greater sense of calmness. It decreased negativity and improved my focus.
In the process, I learned to connect with my body and mind and had a joyful experience. It distressed tolerance and proved a great tool for healing.
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I brightened my atmosphere:
Creating a conducive atmosphere made me feel optimistic. Pleasant lighting, oxygenated plants, and bright colors gave me strength.
Creating a soothing atmosphere helped me feel positive and energetic and promoted healing.
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Taking small and easy steps towards progress:
Taking achievable steps toward a big goal kept me going. Instead of focusing on the result, taking step by step and achieving progress was great. It just kept hope alive and assured that the ultimate goal of wellness is attainable.
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Engaging with and helping my community with rare diseases:
Engagement of hope. There will always be setbacks in life, but people who together fight can solve the unsolved.
My community members made a considerable difference in the way I looked at my disease.
It was a community member who inspired me to start writing blogs and create awareness. Together we learn and interact with others dealing with similar situations. It is a learning experience and generates hope that each one of us can heal.
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Reading and watching positive things:
Given this genre, inspirational movies and readings were very helpful. They not only changed my mood but also changed me as a human being. I applied relevant changes to my life to make it better.
Movies like Rocky and Forrest Gump generated tremendous hope.
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 that situations don’t always remain the same. A composed mindset with the armour of hope can accept failures and live through them.
I was able to reduce my daily intake of pills. Better gut health improved vital statistics, and overall health improvement increased my self-confidence.
The power of hope helped me fight back and overcome insurmountable situations.
We are all fighters in some way. I request my readers to spend their time looking for that hope that could become your strength. It can change your reality.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
