Alive like colors

As I walked into the general ward for my rounds on the first day of my job, I noticed a brightly clothed patient in one bed. My first reaction was to ask the ward in-charge why the patient on A-6 was not provided a patient dress (plain white gown). When the in-charge answered “Oh that’s Mehvish, she never wears the patient gown,” I looked at him questioningly and continued my round.

Next day, I approached Mehvish, a small framed woman in her early thirties, hardly four feet and a few inches tall.  She was sitting upright in her bed, busy looking at her cellphone’s screen. But she looked up and greeted me cheerily, “Oh you must be the new ‘Madam’. Assalam o alaikum!” Surprised, I responded, “Walaikum asaalam, and you must be the lady who needs to wear the patient gown. It’s protocol.” Mehvish protested, “No, please…I don’t like the deathly white gown, I like colors because they are alive, just like I am!” I had never heard a patient draw such an analogy before.

While Mehvish chatted on, I got to know that she had been a patient here for the past 15 years, and at another hospital for 5 years prior to that. Curious now, I picked up her charts while asking her what she did (other than being a patient). She responded with a sparkle in her eyes and dimples on her rather skinny but brightly smiling face that she was a school teacher. She told me proudly that she managed to maintain a routine. I felt a pang of sadness as I saw in her charts that she had suffered from End Stage Renal Disease (ESRD) since the past 20 years, making her permanently dependent on dialysis. Mehvish, immediately sensed that I had understood her medical condition and said, “Here (patting her bedside chair), sit with me, let me tell you how brave I am.” She went on, “My life was normal for 9 whole years before it changed. Instead of toys and books, life handed me medicines and prescriptions.”

I was hooked to her way of narrating her tale. Mehvish explained animatedly that she was diagnosed with ESRD at the age of 10 and a renowned doctor advised a kidney transplant. Both her parents were tested and her father turned out to be a match. At this point, I wondered why she was a “permanent” dialysis patient if her father was a suitable match. Once again, she aptly sensed and answered my unspoken question. After finding out that he was a match, her father abandoned Mehvish and her mother and left, never to return. With a hint of tears in her eyes, she explained how she felt responsible for her father’s actions and her mother’s sufferings since then.

Wiping her eyes with the sleeve of her bright yellow and orange dress, she smiled again and concluded that she had had many complications of ESRD and 3 major surgeries. She had read about ESRD on the internet but she would not give up. Pointing to the fistula on her arm, she said “Look at my fistula. I am very lucky that this fistula is working since my dialysis started as I take care of myself.”

The rest of my day was spent in a haze as I kept thinking about the woman who despite all odds was “alive like colors.” Was her father’s decision of not donating a kidney wrong? Living in a collectivistic society, was the expectation of saving his own child so high that he had to jump ship and never look back? Could he have lived with this family with the burden of not donating a kidney while he watched her suffer? Or would it have been more just if he had the right to refuse regardless of social and societal pressures? I also could not help but wonder if the father would have left them to their fate if Mehvish had been a boy child.

It has been a year since then. She still gets dialyzed six times a week and has been critically ill twice…but she is still colorful, like life itself.