Living With Lupus | Suffering From Chronic Illness Since 2012
Medicine, for me, is a part of life, but I have always hated taking it.
As a child I never wanted to take medicine, which tasted like a bitter gourd and made me feel like vomiting.
I never took medicine when I had a fever, stomach pain or a headache.
But in serious cases, my dad would stare at me and wouldn’t let me go until I took my medicine.
Sometimes I used to throw it out and act as if I took it and would drink a big glass of water.
I was in the 6 th grade when this chronic illness ‘Lupus’ got its grip on me. I got really sick.
My my body swelled, my cheeks were flecked with a butterfly rash, my hands cracked, my legs cracked, fluid dripped from my mouth, sometimes this, sometimes that I hated my life.
I did Jhankari, offered many chickens, went to many hospitals in Surkhet, in Nepalgunj, in Kathmandu, Lucknow but nothing affected me. The medicine I hated now became unavoidable. People took pictures of me.
Living With Lupus
In Lucknow, a doctor said to me, “It’s very sad for you to get this disease at such a young age.”
Was I going to die? I felt like I was in the last stage. We were broke.
My dad and I escaped from the hospital in Lucknow and came back to Surkhet.
I got lucky because I was a student at Kopila Valley, and they didn’t let me die.
Uncle Tope, who is the co-founder of Blinknow, provided us some money.
Then we returned to the Army hospital in Kathmandu. Doctors ran tests. I was admitted to the hospital for 36 days. I ate through a tube connected to an injection, only liquid for 16 days.
My doctor did a kidney biopsy with a long needle. At last, they told me it was SLE, Systemic
Lupus Erythematosus.
Since then, my every move has been limited.
I had to take 10 pills every day, starting
from before my morning tea until before I fall asleep.
I had dark skin, puffy face, thin legs, and big stomach. I didn’t fit into clothes in wanted to wear.
I didn’t have the strength to accept myself.
Not only that, I had to be very careful of what I ate and what I drank.
One of my friends would tease me, saying, “we can’t afford mineral water for Deepa.”
Some also to tease me by singing ‘gala ratai gala ratai’ because my cheeks used to turn red in a butterfly shape.
My bones were too weak to carrying things.
My parents had to carry my bag to the school and pick me up and sometimes my friends would have to do this for me. I missed a lot of class.
I was never happy because I have always wanted my normal life back.
I went into depression few times during those years.
Later I got to know that it is never going to let me go because there is no cure for lupus,
but I can manage it for the rest of my life.
Then back in 2013, when Word Warriors came to Kopila Valley to organise poetry slam.
I found my voice in words. I found poetry the most fascinating.
I started writing whatever came to mind, kept in touch with my feelings.
This opened me up to the world. I have to live, I realised, because the world is beautiful.
My love for poetry has brought me into the capital city. Though I get homesick, I’m
happy that I can earn for a living, earn enough to cover my checkups and prescriptions,
while still being able to write, perform, and travel. I am not letting lupus destroy my life.
I have learned so much from my own life and from this illness. Finally, I have started
dreaming again.
रगत__Blood Art of War: The Guernica Picasso Painting, 1937
Originally published at https://www.voicedairy.com on July 22, 2021.
