COVID19 Killed My Uncle, His Name was Zulfikar

All of us have a special responsibility to take better care of each other and protect our most vulnerable. All of us.

By Fatema Z. Sumar

Zulfikar Gunja at his long-term care facility, Gateway Care Center in Eatontown, NJ — photo taken June 2016.

As the death toll from COVID19 surpasses 70,000 in the United States, it is easy to become desensitized to the ravages of the pandemic. We define our national character in the way we honor each victim, particularly our most vulnerable. My uncle is one of those victims — his name was Zulfikar.

COVID19 hit home for me when I lost my beloved uncle Zulfikar Gunja to the virus on April 18. “Kaka” as we called Zulfikar, meaning father’s brother in the Indian Gujrati language, would have turned 69 this November. Ironically, I only learned his real birthday as he died since as a child we celebrated him monthly and sometimes weekly whenever it was anyone’s birthday — or if he just wanted ice cream or needed a distraction.

You see Kaka lived with Down’s syndrome, autism, and advanced dementia and understood only broken English. For the past few years, he was largely bed ridden, requiring a lot of physical effort to dress and feed himself and move into his wheelchair for a special visit or occasion. But before his condition deteriorated and he moved to Gateway Care Center in Eatontown, NJ, Kaka lived with his brothers’ families, touching the lives of four generations of my extended family.

Kaka lived with Down’s syndrome, autism, and advanced dementia and understood only broken English.

Kaka was the youngest of seven brothers and sisters, growing up in poverty in Mumbai, India. His mother died when he was young, leaving him to the care of his family, which had little means or knowledge of caring for someone with his needs. He had a new chance to experience a better life in the 1980s when his siblings helped resettle him here in the United States.

As a child, I grew up teaching Kaka how to spell his name and count to 10 in English, chased him in the yard until he got mad, and cheered him on when he got a match in the game of Memory. We laughed and played together. Each of my family members have similar powerful memories of him.

Caring for someone so special is unique. There would be tough days that required extra patience. But they were offset by the moments when Kaka delighted in little things — getting a new baseball cap, showing off his wallet with two dollars inside, or praying at odd hours of the day in his loudest voice.

Ultimately, Kaka taught us all how to put the needs of others ahead of our own and find joy in the simple pleasures of life. He had a profound impact on my upbringing and even my career choices. In fact, my first “real” job as a teenager was as a counselor at Camp Daisy, a center for young adults and children with special needs.

Last month, Kaka experienced a high fever and trouble breathing, many of the COVID19 symptoms now so familiar to us. His initial COVID19 test was negative, but he tested positive a few days later after he was rushed to the Intensive Care Unit (ICU) at Jersey Shore University Medical Center. The hospital was overwhelmed with COVID19 cases; every ward except for Oncology had been converted into COVID19 wards.

With no family members allowed to visit, it was difficult to get updates on his condition and assess medical options for his care. Something simple like helping him eat his meals became challening. As a non-verbal, non-English patient, communicating with him and explaining why no family members were with him was almost impossible.

My sister — who is a cardiologist on the West Coast — spent countless hours triaging on the phone with medical staff & family. Despite the heroic efforts of the medical team and family members like my uncle involved in his care, after days of intense struggle, we accepted the heartbreaking decision to move him to “comfort care.”

Watching someone die virtually of COVID19 is surreal. Thanks to the compassionate hospital staff, extended family across the United States, Canada, and India sat vigil by his bedside virtually by Zoom for his last few nights. We hoped he could hear our voices and prayers and not feel alone or abandoned. On the “Brady Bunch” screens of our laptops, we openly cried, fought over decisions, and tried our best to feel connected while being isolated. It was the best of Zoom, it was the worst of Zoom.

Watching someone die virtually of COVID19 is surreal…It was the best of Zoom, it was the worst of Zoom.

On April 18th at 3:54pm, I watched on my laptop as he took his last two breaths. A nurse held his hand so he was not alone. We each shared our last words, cried, and wondered what happened next.

The cemetery where we wanted to bury him — next to my father — had a weeks-long waiting list due to the high number of COVID19 deaths in NJ. Nonetheless, he was promptly buried the next morning in another cemetery after going through NJ state protocols for COVID19 deaths.

With only two family members allowed at the gravesite, I prayed via Zoom, observing Islamic funeral rites as much as possible, given the circumstances.

In the days that followed, I found comfort in the outpouring of support I received from family, friends, neighbors, and my work colleagues at Oxfam America. But I struggled with the anonymity of his death as just another pandemic statistic. And I grieved for all those families that had lost loved ones to COVID19 and for those that would in the coming days.

I struggled with the anonymity of his death as just another pandemic statistic.

The reality is COVID19 is our foreseeable future; we are in our “new normal.” So how can we just sit by as a nation and allow tens of thousands to die? The simple truth is all of us have a special responsibility to take better care of each other and protect our most vulnerable. All of us.

Zulfikar Gunja was a special soul. But like too many others, his life was cut short prematurely due to COVID19. We all know someone like Kaka — and our world is better if we fight to keep them in it.

Vice President of Global Programs @oxfamamerica| Trekking the globe with a carry-on suitcase| Tweets/RT/likes my own.

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