“Your time starts now. You may begin your examination.”
These were the words said moments before a life-altering moment during my high school years. It was a typical Saturday morning, and like many high school students, I was caught up in the whirlwind of SAT preparation and college applications. Little did I know that a phone call from my Aunt Lucy would change the way I viewed life and death forever.
To truly understand the significance of that phone call, it’s essential to dive into the background of my Aunt Lucy. Lucy is the youngest of three siblings, and her life journey has been far from ordinary. Like any youngest sibling, she was always the favorite, was always spoiled, and always had two older siblings to look out for her. What makes Lucy unique is that she was born with an extra 21st chromosome, also known as Down syndrome, making her the first and only family member with this condition. This diagnosis presented a unique challenge for my grandparents as they navigated uncharted waters in parenting, understanding that Lucy’s life would take a different path than her older siblings’.
As Lucy grew up, my grandparents discovered that her cognitive abilities were not as limited as they initially thought. While she faced academic challenges, her emotional intelligence, social awareness, and independence continued to flourish. My grandmother, a devout believer and practitioner of Hinduism, undertook the responsibility of instilling religious and moral values in all her children, Lucy included. Through years of patient teaching and one-on-one interaction, Lucy began to grasp these principles. Her close relationship with my grandmother allowed her to develop not only a deep understanding of these values but also a unique unbreakable bond with her mother.
Lucy’s growth extended beyond the home. She learned essential life skills through specialized programs, such as internet browsing and email use. Lucy defied the expectations set by medical professionals and expanded her cognitive abilities beyond anyone’s imagination. Her independence increased over time, as she became a caring and responsible young woman. These traits became more and more apparent as my grandmother got older and her own capabilities began to diminish. The roles had begun to shift: Lucy, who was once the recipient of care, now became the caregiver, taking on household responsibilities and providing emotional support for my grandmother. As my grandmother continued to age, her mental state continued to deteriorate prompting her children to have both her and Lucy move into an assisted living facility. The transition to the facility allowed them both more independence and a better lifestyle. Lucy and my grandmother thrived for the next two years up until I received the call.
In the middle of a practice test, my phone buzzed with an incoming call from Lucy. She very rarely used her phone to contact me, so I knew something important had to be going on. Lucy’s words were difficult to understand as she just repeated, “Fire, fire.” My initial assumption was that there was some sort of accident while they were cooking and something must have caught on fire. Confused but concerned, I packed my bags and rushed over to their apartment. As I got closer to the door, I heard a faint screaming coming from inside. I swung open the door, rushed inside and was met with a horrifying scene: my grandmother, rolling on the floor, engulfed in flames, and Lucy stood by with a half-empty bucket of water. I immediately dialed 911, and as they were on their way, I helped Lucy get more water to put out the flames. As we frantically ran back and forth filling up and emptying the buckets, Lucy, in utter shock and confusion, tried to explain what had happened. As mentioned earlier, my grandmother was a devout Hindu, and a big part of her daily routine involved her prayers. Each day, she would sit down in her traditional Indian Saree (a South Asian garment composed of lightweight fabric draped around the torso and waist) and begin her prayers with the Hindu tradition of lighting a small oil lamp and placing it in front of the deities. Lucy explained to me that as my grandmother was wrapping up her prayers, she accidentally knocked over the oil lamp, and it fell onto her saree. The fire caught almost instantly, spreading across her body in a matter of seconds. As the paramedics arrived, they rushed my grandmother to the hospital and transferred her to the intensive care unit, where she ultimately passed away.
The hospital waiting room was filled with grieving family members as the doctors shared the news. Emotions were flooding and tears were flowing. However, one family member stood out in her reaction to the tragedy — Lucy. She sat in the waiting room with a calm and emotionless demeanor, almost as if nothing had happened.
Years have gone by now and I still think about how Lucy had processed the loss of her mother. Losing one’s mother in such an extraordinary circumstance is not only traumatic/scarring but also comes with a plethora of emotions. Whether it be sadness, regret, or even guilt about how she handled the accident, Lucy had to battle this inner turmoil on her own. Initially, Lucy’s siblings believed that she probably didn’t fully understand or remember the traumatic events, thereby sparing her from potential emotional damage. However, my growing understanding of Lucy’s cognitive abilities and her special relationship with my grandmother led me to believe that there was more to the story.
It has now been nearly a decade since the accident when I decided to have a conversation with Lucy about that day. Given the preconceived notions and beliefs about Lucy’s condition, I did not expect to get much from this conversation. However, as the conversation started, it was abundantly clear that Lucy had processed the events more than any of us considered, prompting me to explore the conversation further.
“Lucy, do you know where Paati (my grandmother) went after the hospital?” I asked.
“No,, she responded
“Do you know where Paati is now?”
“Yes, I think so … she’s in heaven.”
“What do you mean she’s in heaven?”
“She and my dad are with god. I know they are watching over me and I pray for them all the time. I really miss them.”
After this conversation, I think I finally found my answer. Because Lucy has Down syndrome, everyone, myself included, discredits her; thinking that she is unable to process death and that she does not have the cognitive ability to process death along with the emotions that come with losing a loved one. Because our family is filled with doctors, including her own sister, we all accepted that they knew best about her emotional intellect. We never truly took the time to confer with Lucy and give her the ability to communicate her own struggles with grief nor did we give her the opportunity to be supported in the way the rest of us did together. Despite our love for her, Lucy suffered from our own stigmatization.
After delving into the details and nuances of Lucy’s upbringing, specifically her strong connection with her mother, I gained insight into how people with Down syndrome may view and process the concepts of life and death. As mentioned before, Lucy’s condition mainly affected her academic learning, yet it left her free to explore other aspects of life, notably, religion played a significant role in her journey. My grandmother’s devout religious practices, coupled with Lucy’s lifelong companionship, allowed Lucy to slowly gather bits and pieces of spiritual knowledge and belief to construct her own unique perspectives. This along with her innate sense of curiosity allowed Lucy, over time, to explore and build upon her rudimentary understanding of death.
At the time of my grandmother’s passing, we were all confused and worried about the lack of emotional response from Lucy. The initial and biggest error made by our family was mistaking her blank face for apathy or a lack of understanding. Had we taken the opportunity to acknowledge the sentience behind Lucy’s emotional intelligence, we may have seen her soon-to- be-processed grief for what it was. Over the weeks, months, or even years after her mother’s passing, Lucy continued to observe other people praying for her mother after her death, seeing people who she knew leave and never come back, as well as the corresponding emotional response from the people around her when these things happened. She continued to add these little bits and pieces of information to the baseline understanding she had already made to form her own, unique abstract view of life and death.
It is a common misconception that people with Down syndrome cannot comprehend or process abstract concepts such as death. Physicians and society as a whole have always placed a barrier on the intelligence level attainable by people with disabilities. Lucy’s story not only challenges this belief, but it also reminds us that all our patients, no matter their cognitive capabilities, have their own personal way of understanding and processing the complexities of life. It is not up to us to determine how someone process information and expresses themselves, but rather our jobs as physicians to learn new methods to communicate with others. Her story serves as a powerful reminder not to hastily dismiss someone, urging us to challenge our preconceptions and stereotypes about mental disabilities. It encourages us to recognize the capacity to learn and evolve through the profound spectrum of human experiences.
Image credit: Diya (CC BY-NC-ND 2.0) by Subash BGK
Contributing Writer
Florida International University Herbert Wertheim College of Medicine
Karthik is a fourth year medical student at FIU Herbert Wertheim College of Medicine in Miami, Florida class of 2024. In 2021, he graduated from University of Miami with a Bachelor of Science in Microbiology and Immunology. He enjoys weightlifting, sports, traveling, and trying new foods in his free time. After graduating medical school, Karthik would like to pursue a career in Anesthesiology.