Uncle Chris

It was a peculiarly cold morning for May. I was living in Zurich, miles from home. The pandemic had made it difficult to see my family back in the United States, and communication between unrelenting schedules and the eight-hour time difference was scarce. I was busy with work, spending all of my days at the Opera House, for I had pursued ballet my whole life to attain the job I had acquired. Having little time for myself or others, I became preoccupied with my own world.

It was a busy season at the opera. My exhaustion made me irritable, and minor inconveniences turned grandiose. The struggles I faced in managing to stay on top of my work, battle the shadows of loneliness, and stay afloat, were all-consuming and it seemed I wore the phrase, “nobody understands” upon my sleeve. 

On this cold morning, however, I received a phone call from my father whom I had not spoken to in weeks. His voice uttered the words that I knew would come eventually, that I feared would come too soon, and that I wished I could avoid. 

“Uncle Chris passed away last night.”

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Uncle Chris was older than my father, but he had severe Down Syndrome which prohibited him from speaking and functioning as the other adults in my life. In addition to his extra chromosome, he was born with Diabetes type one. His health was constantly in a state of distress, and he required a caretaker at all hours of the day. Uncle Chris would always come to our birthdays and would stay at my grandmother's house from time to time, but after she died my father was the only family member he had to take care of him. Sundays were the one day a week Chris would see his family when he lived at the shelter with other disabled adults. It was a ghetto area in the east of San Jose, and the shelter was more like a run-down home that had been on the market for years. We were the only people left in Chris’s life in California and we couldn’t see him nearly as often as he deserved. 

Uncle Chris had a perfectly sweet disposition with incredible quirks. He had a great infatuation for shoes, and our Sunday adventures would always end up with a trip to the sneaker store, where he would inevitably try everything in stock, including both the women's and men’s shoes, becoming a trailblazer for the nonbinary style. He also loved action figures, which he would collect and fight with. But most apparent was the love he had for his family. 

 My younger brother and I were a chatty bunch and enjoyed watching movies and cartoons with our uncle. Looney Tunes was our favorite, but we were also fond of Land Before Time. My brother and I would quote the shows to each other around the house with persistence in Chris’ presence, to which our uncle would grin a wide toothless grin and make the sweetest sound of pure joy as he laughed at his niece and nephew. His laughter made us laugh even more, and the vicious cycle made our abdominals ache and our cheeks grow tired.

When the years passed, however, he started wearing diapers, losing more teeth, and his ability to walk. When he realized my grandmother had passed away he screamed more often, yelled at the caretakers, and hit back. Some would say he became a liability, but I think he was just a man in more pain than we could understand. When the aggression grew he was not allowed outside the house where he stayed. He was a prisoner to himself and the disease he never chose. 

I used to daydream about what Uncle Chris would have been like if it were not for his Down Syndrome. What would his voice have sounded like? What would he have been interested in? Would I have inherited any of his characteristics? Would I have looked like him? Would he have children, and me more cousins?

My father confessed that he also thought of these questions frequently but explained that people like Chris were supposed to remind others to be grateful, how to act compassionately, and how to empathize. He said that when he would walk around with Uncle Chris he could tell who people were. Did they step out of line to let us pass with the wheelchair? Did they stop and stare with disgust? Did they smile and nod with an appreciation for the ones pushing the chair? It was interesting to witness a different angle on humanity. 

When I was ten years old, my father took my brother and me to pick up Uncle Chris from the daycare where he stayed in between trips from the shelter and my grandmothers’ house. It was on this day that I realized for the first time how many people there were who looked like Chris, who lived like he did, and weren’t afforded the luxuries to live like everyone else. Upon entering the doorway I was greeted with screams, shrieks, laughs, and life. There was so much masked pain in this place, and the women who worked there bore it all with love and calm on their faces despite the immense difficulty of their job. These women were making next to nothing, and most of them were sending it back to their families in remittances, such as my Uncle’s favorite caretaker, Victoria. 

It was like I had entered a secret society. When you see one person with a disability in a social setting it can often be off-putting as it pulls your attention, witnessing something “different”. But here I was, and in a way, I was the different one. I was stepping into a world with so much unknown, I couldn’t fathom how their brains were processing my stepping into theirs, or if they were processing me at all. It was overwhelming, to say the least, but it also gave me relief that my Uncle Chris wasn’t alone. 

When we helped him get into the car and he shined his lopsided grin accompanied by the universal thumbs-up, I couldn’t help but wonder about all the other people left in the daycare and how long they had been there. Did they even have a family to pick them up? Someone, to take them shoe shopping and out for frozen yogurt as Chris loved so much? It left me wondering. What was Chris thinking? Did he know how loved he was in this family of his? Did he recognize what that felt like? I hoped more than anything that he did, and to this day, I feel nothing but gratitude for everything he has taught me. 

The phone call I received on that mysteriously cold morning in May, reminded me of the simplicities of life, of perspective, and the great joy it was to know Uncle Chris and have him as a teacher in my life.