A Journey of Resilience and Rediscovery
Lupus Journey Being A Rollercoaster Ride
A Journey of Resilience and Rediscovery, Living with Lupus has been a rollercoaster ride, filled with physical and emotional challenges that have tested my strength and resilience. My name is Deepa Bohara, and I was diagnosed with Systemic Lupus Erythematosus (SLE) in 2012 when I was just a sixth-grade student in Surkhet, Nepal. Since then, Lupus has become an inseparable part of my life, shaping my experiences, altering my perspective, and teaching me invaluable life lessons. Join me as I share my personal journey, the highs, and lows, and how I have learned to embrace life despite the challenges.
The Bitter Taste of Medicine
As a child, I despised taking medicine. The bitter taste, reminiscent of a bitter gourd, made me recoil. I refused to take medication even when I had a fever, stomach pain, or a throbbing headache. I would stubbornly refuse to take any medication. However, there were times when my father’s stern gaze would force me to swallow those dreaded pills. Sometimes, in an act of defiance, I would pretend to take the medicine and wash it down with a large glass of water, secretly discarding the bitter pill.
Little did I know that medicine would soon become an unavoidable part of my existence.
The Unexpected Encounter with Lupus
It was during the sixth grade when Lupus, a chronic illness, took hold of my life. I fell seriously ill. My body swelled, a butterfly-shaped rash appeared on my cheeks, my hands and legs cracked, and I experienced fluid dripping from my mouth. It felt like my life was engulfed in a never-ending cycle of pain and discomfort. I resented every aspect of my existence.
In search of a remedy, I turned to traditional practices like Jhankari and made offerings of chickens. I visited numerous hospitals in Surkhet, Nepalgunj, Kathmandu, and even Lucknow, hoping for a cure. Yet, nothing seemed to have an impact on my condition. The medicine I once despised now became my only hope. People started taking pictures of me, capturing the visible struggle I was going through.
During my time in Lucknow, a doctor uttered words that struck me deeply, “It’s very sad for you to get this disease at such a young age.” Was I destined to die? It felt like I had reached the final stage of my life. To make matters worse, we were financially struggling.
The Desperate Search for a Cure
Determined to find a way out, my father and I left the hospital in Lucknow and returned to Surkhet. Fortunately, I was a student at Kopila Valley, where they refused to let me succumb to my illness. Uncle Tope, one of the co-founders of Blinknow, provided us with some much-needed financial assistance. We then made our way to the Army hospital in Kathmandu, where doctors conducted numerous tests. I was hospitalized for 36 days, surviving on a liquid diet through a tube connected to an injection for 16 of those days. The doctor even performed a kidney biopsy, using a long needle to gather crucial information. Finally, the diagnosis was confirmed: Systemic Lupus Erythematosus (SLE).
Struggles and Triumphs
Since then, my every movement has been restricted. I was required to take ten pills every day, starting from before my morning tea until just before I fall asleep. My skin darkened, my face became puffy, my legs grew thin, and my stomach expanded. I struggled to fit into the clothes I longed to wear. Accepting myself seemed like an impossible task.
Not only did I have to be cautious about what I ate and drank, but some of my friends would tease me about not being able to afford mineral water. They would even sing a mocking tune, “gala ratai gala ratai,” referring to the redness that would appear on my cheeks in the shape of a butterfly 🦋🦋 (butterfly rash) caused by lupus.
My bones grew weak, making it difficult to carry things. My parents had to bear the burden of carrying my school bag and picking me up from school. There were times when my friends would step in to help. I missed countless classes, and happiness felt like an elusive concept. I yearned for my normal life to return. There were moments when depression consumed me. Eventually, I realized that Lupus would always be a part of me. There is no cure, but I can manage it for the rest of my life.
Finding Redemption in Poetry Resilience and Dreams Reborn
Then, in 2013, Word Warriors came to Kopila Valley to organize a poetry slam. It was there that I discovered the power of my voice through words. Poetry became my solace, allowing me to express the whirlwind of emotions within me. Through writing, I found a connection to the world and realized that life was worth living because of its inherent beauty. My love for poetry brought me to the bustling capital city, Kathmandu. While I often feel homesick, I am grateful that I can earn a living, cover my medical expenses, and pursue my passion for writing, performing, and traveling. I refuse to let Lupus destroy my life. Instead, I have learned valuable lessons from my journey, and I am finally daring to dream again.
Resilience and Dreams Reborn
As I delved deeper into the realm of poetry, I found myself yearning for more. Despite the challenges posed by Lupus, I refused to let it define me. With newfound determination, I ventured to the bustling capital city, balancing my health and dreams. Homesickness tugged at my heart, but the opportunity to earn a living, cover medical expenses, and pursue my passion for writing, performing, and traveling was an incredible blessing. Lupus would not be the destroyer of my dreams; instead, it became a catalyst for my growth and resilience.
My life has been profoundly impacted by Lupus since 2012. It has tested my strength, challenged my resilience, and forced me to confront my vulnerabilities. Yet, through it all, I have discovered a newfound sense of purpose and a determination to live life to the fullest. Lupus may have altered my path, but it has not defined me. Living with Lupus has been an arduous journey, filled with pain, setbacks, and moments of triumph. Through the rollercoaster ride of emotions, I have learned valuable lessons about resilience, self-acceptance, and the beauty of life itself. Lupus is a part of me, but it does not define me. It has shaped my experiences, broadened my perspective, and ignited a passion for living life to the fullest. Today, I embrace the imperfections, navigate the limitations, and celebrate the moments of joy that shine through the cracks. Lupus may have altered the trajectory of my life, but I am determined to make my mark, to inspire others, and to show that even in the face of adversity, life is worth living.
I am a warrior who refuses to be defeated, and I continue to embrace each day with hope, courage, and a passion for writing.
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