By Aditi Kantipuly

From the day we are born, we are constantly inundated with information on how to live and our puzzling meaning of our existence. Yet as a society, little is spoken about preparing for inevitable outcomes. While death is a touchy subject for many, I still felt it was necessary to address this, to foster a much needed dialogue.

 

Not long ago, death robbed an individual very close to my heart, Nihal Bitla. Nihal lost his battle to Progeria at the age of just fifteen. For those who don’t know what Progeria is, it is an accelerated rapid aging disease. I assumed I had no amount of words that could take away from his family’s pain of their loss, and I couldn’t make a difference.  I finally had the courage to talk to Nihal’s father yesterday (the first time we spoke in weeks) and I now regret not having picked up the phone earlier. Here’s what I’ve learned in retrospect about reaching out to a family after a death:

 

Grief is a metamorphosis with an undefined timeline. There will never be the perfect time, nor will you ever find the perfect words. There is no right or wrong in emotions. Rationalizing emotions by offering them a logical reason : “they are in a better place now without the suffering” OR, “she passed away peacefully in her sleep”, all plunge into the arena of justifying why death had occurred. What should you do instead? Try to put yourself in their shoes. By allowing yourself to feel their struggle, you become more empathetic and less entwined with mechanical phrases.

“I understand” is a phrase to use cautiously.  The experience of one individual is always different from another. Everyone perceives and experiences the world differently.  Raising a medically fragile child within an umbrella of factors such as socioeconomic status, religion and culture can all impact the grieving process.  As a result, caregivers, friends, and extended family members all will experience grief differently. Be extra sensitive. You may not always hold the same values or beliefs as the family or your friend who has just lost their loved one.

Find purpose in the moments you shared together. While these conditions might be rare, the strength and resilience that unifies a rare disease community is not. When we hear about untimely deaths, we are often swift to offer prayers and support, sometimes not even knowing who they were or what they stood for. Although, I’d only very recently met Nihal, in our few interactions, he profoundly influenced who I am today. Nihal personified passion in his artwork and he unequivocally understood what it meant to “live in the now.” Honoring someone’s life means having those values continuing to live through you.

Nihal, you will always remain relevant and like this picture you drew of the Taj Mahal, a timeless wonder, you will remain timeless in our hearts.

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Learn more about Aditi, her mission and the Fullbright Scholarship in her first post here.

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