Ode to My Dear Sister and Fighting Ableism

Last night, my sister Madhu took her last breath. She is three years older than me. My earliest memories of her and me are us licking the popsicles that we bought for 3 cents at our corner ice cream shop. Then, riding the shoe boxes tied to a string and running around the home when I was aged 5. I have a photographic image of me stopping to mindfully look at her almost bumping into me, which I now understand as my formative moment of developing compassion. I knew she was blissful in that very instance, despite her failing eye sight.

Madhu was born healthy, but with a genetic condition called xeroderma pigmentosa, ultraviolet rays affected her eye sight and skin that got pigmented. She gradually became legally blind with corneal ulcers as a 6-year-old and lost her eyesight as a young adult. She also developed a bone tumor (giant cell carcinoma) to her dominant right arm that made her arm limp after surgical excision. That was when I was studying pathology in Medical school. Later, her eye balls sunk, leaving no visible eye shape, with enophthalmos. It was a thump in our stomach at each of these health events that she faced gracefully.  

The hardest thing growing up for me then was how people stared at her/us like a specimen. Madhu did not know those stares due to her poor vision. I experienced the mixed emotions of sadness and disappointment as a young child, restricted by the closed windows at home to protect her from UV rays. On many counts, darkness pervaded us. I experienced anger towards the folk who treated her “as inferior to the non-disabled,” which essentially is termed “able-ism.” She is smart, kind, compassionate, and reeled in joy when she learnt of her siblings’ accomplishments and consoled us when we faced disappointments. She stood as a touchstone in my mind with her inner strength despite the countless benefits of life that were taken away from her. She sang beautifully. She was frugal despite our parents’ solid financial background, acquiescing to lesser means than we all did. She built up everyone around her, elevating their importance. She lived with my parents and dished out her astute counsel, admonished them and lovingly helped in chores. She was incredibly grateful for every little thing I could do, which was really next to nothing. She would fondly caress my sons, and our niece and nephew and loved them as her own. Madhu is a force.     

As a Psychiatrist, I was able to openly reflect with the families and siblings who are living with disability. The following are good side effects of living with a sibling with challenges.

  • I am able to see the parents’ relentless strength, respect and love that made my sister strong.
  • I am able to see how, as an “unaffected” sibling,  I am elevated beyond what I deserve, merely through how outside world would compare me to my sister just based on my ability next to disability. Therefore, I thrived thinking I was very ‘capable.’
  • I also feel siblings like me and my brother developed humility and valued others’ kindness through living in a family affected by disability.
  • In the darkest moments of life, if I compared where I am/was with what my sister did or did not have to be content, I instantly touched upon the life lesson of gratitude.  
  • It is important to take extreme care to not talk to folks like my sister as though they are not people, prognosticating their lives and discussing them, right in their ear shots as though they cannot understand or do not have any feelings. Able-ism must end. I ask people to respect and shower kindness on those with challenges wherever there is an opportunity.

The year 2021 arrived. There was no phone call that she usually initiates on all our birthdays and our wedding anniversary. We may forget our own special dates, but never she. Then, I suspected something was up.  Madhu finally went into coma after quick deterioration. Longevity with her disorder was 30 years, and we were lucky to have her for twice that! We were able to say goodbye with the help of several loving family and friends that huddled around us on both sides of the seas that separated us. My husband says thanks to the WhatsApp. I will treasure her memories calling me “my little gold” and telling me it was highlight of her day as I dialed her each morning. She is the one who is golden and sweet like “honey,” the meaning of her name Madhu.

PS. This photo was taken by me on my last visit to India prior to the pandemic in November 2019.

Mani Pavuluri, July 25, 21

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