SUFFERING THROUGH NIGHTMARE
My nights were particularly horrible. The constant itching of my skin made sleep elusive, and my bed would become a distressing scene. White flakes would litter the mattress, and blood stains would mark the sheets.
This created an unhygienic environment, with red ants spreading all over the floor and mattress. My mom would never fail to wake up in the middle of the night to clean up the mess and apply Vaseline to soothe my skin, gently coaxing me back to sleep. I had to sleep separately from my siblings to avoid disturbing them frequently through the night.
My clothes had to be washed separately.
It was a nightmare, a constant battle against my own body.
At times, to distract myself from the incessant itching, I would play with toys, seeking refuge in their silent companionship.
My mom had to dress me in cotton clothes with full sleeves and socks, covering the disease on my arms and legs, shielding me from the world's curious and often unkind gaze.
I truly felt sorry for her and tried my best to cope with the disease on my own, bearing the burden of this illness and the emotional toll it took on my family.
It was a difficult and isolating time.
My parents were relentless in their search for a cure, taking me to renowned skin specialists not just in our city but across India. Back then, psoriasis wasn't as well-understood, and effective treatments were scarce. School became a place I dreaded, each day bringing inevitable embarrassment. Everyone wore uniforms but I had to be dressed in long sleeve shirts and cotton stockings.
Now I was even more different and visible. The friends I cherished slowly drifted away, seemingly afraid of being near me physically. Even simple outings with my mother turned into public spectacles, with strangers staring, questioning, and offering unsolicited remedies.
It filled me with a confusing anger, a deep frustration at not knowing how to navigate a world that seemed to recoil from me.
I kept mostly to myself, listening to music, mostly sad songs as if they were telling my story through music. I would stand perched on the balcony and watch while other kids happily played. At this time I was too innocent to understand my predicament.
Page 5
RELOCATING TO A POSH AREA
Despite these challenges, my family's support, especially my mother's undeterred strength, saw me through primary school. We relocated to a posh area in South Mumbai, moving into a lovely, spacious 3-bedroom apartment overlooking the sea and the city. The apartment was on the eighth floor and the clear view of the vast ocean was just breathtaking and right across was a famous Hindu Temple.
This move marked a turning point, as I gained a better understanding of my disease and how to manage it. I got into secondary school and found it easier to make friends, perhaps due to increased self-confidence or a more accepting environment.
Every evening, I would watch the sunset, the beautiful waves crashing against the boulders, their rhythmic symphony inspiring the music within me. The serene atmosphere evoked a feeling of calmness and peace, a welcome respite from the inner turmoil I often felt.
My love for music blossomed, and I found inspiration and joy in dancing. We had mirrors and a wooden stage in one of the bedrooms, and with the scenic view, the soothing sound of the waves, and the gentle breeze, I would dance every evening to the English songs of the 80s and Bollywood dance music.
This newfound passion, this immersion in music and movement, helped me cope with the disease. I discovered that the happier I was, the less visible the spots would become. It was then I realized how mental stress was affecting the flaring of the disease. I had finally found some solid ground, a sense of stability and contentment that had been missing for so long.
Even now, the memory of my apartment, just across from the temple, feels vivid. Those evenings, as the sun dipped low and the temple priest began their dusk prayers a ceremony of waving lighted lamps in a clockwise motion before a deity
I would feel myself drawn into a spiritual trance. My heart would beg for a reprieve from the disease praying silently with teary eyes.
With time came acceptance and gradually it became a part of my life story, an undeniable truth I carried. And in the world of flowing fabrics I found various fashionable outfits, to cloak the spots that once felt so exposed. Fashion became an unexpected ally, a means of self-expression that allowed me to design my own clothes, a shield against the curious and sometimes unkind eyes of the world.
I mastered the art of dressing and it elevated my spirit and confidence.
Page 6
