Reflections on Hezzie - A beautiful life, and the people who stay with you
When I was fifteen years old, I had my first ‘official’ role in healthcare - as a candy striper at Women’s and Children’s Hospital of Buffalo, as many weekdays during the summer as they would have me.
Although I was originally slated to volunteer on the infusions unit that my brother frequented, with nurses Rae-Ann and Louisa (constant figures of importance in our family’s life at the time), I was told that they needed more help in the dialysis center. I landed there, trying to stay out of the way, one Wednesday afternoon in early July.
It’s been nearly 20 years, but I clearly remember walking into that dialysis unit for my first day, seeing the many Christmas cards from grateful families plastered on the walls, and then noticing a really small, happy kid with a retainer dressed in orange, with long dreadlocks pulled back from his face, laughing with one of the nurses as she started his dialysis treatment. He was sitting in the middle bay, and the rest of the center was empty. It was around 1pm on a beautiful summer day, and probably no one’s top choice for dialysis timing.
This was Hezzie, short for Hezekiah. Hezzie was 9 but had the stature of a 5-year-old, dancing eyes, and a constant grin. Presented with a stranger who was clearly here for a summer volunteering gig (in my overly-formal ‘business casual’ polyester silk clothes bought from the bargain rack at Kohl’s the weekend before), Hezzie was welcoming, curious, and ready to be my friend.
Luckily for me, becoming Hezzie’s friend ended up most of the job description that summer.
In between fetching new warm blankets, juice boxes, and saltines for the patients and parents sitting around, I learned about Hezzie’s life. He lived with his grandma and his dad, as his mom hadn’t ever been around much. He had been experiencing dialysis treatments for most of his life, after an early diagnosis of kidney failure had required two transplants, neither of which had done the trick for long. Hezzie was listed again for transplant, but in the meantime was making it work with dialysis most days of his life - in between, being remarkably normal as a middle-schooler with a basketball obsession. He liked Pokemon, and I did too, and once in a while we were able to get access to the hospital’s Playstation. Otherwise, aside from just chatting about whatever was on our minds that day, he actually wanted some help with his homework - Hezzie had never had a ton of luck in school, but he wanted to learn. I was a very nerdy kid, and excited to try tutoring with Hezzie as my guinea pig. We ended up doing multiplication with those old array table boxes, and puzzling through some of his 6th grade science homework on the other days. Hezzie thought everything was funny, and he brought joy to a task I usually thought of as very serious and important. When he didn’t understand something, it wasn’t a panic moment - he would try to get it, and if it didn’t stick, that was okay too.
Hezzie, at 9, had already acquired some wisdom that I am just now starting to glimpse in my 30s.
On one of those sunny summer days in the dialysis unit, Hezzie was subdued. He was wearing a huge black leather jacket, draped across his shoulders like an oversized shawl. When I walked up to him, he told me - with deep pain and confusion in his eyes - that his dad had passed away that weekend. His dad was only about 30 years old. Hezzie was wearing his dad’s motorcycle jacket, which his grandmother had given him. She was now the only person left at home.
I felt like I had been punched in the gut. Hezzie had been dealt a hand so wildly different from mine, growing up a 20 minute drive away. At every turn, it seemed that he had another ridiculous hurdle to overcome.
I didn’t really know how to react, but I stayed with Hezzie that afternoon, and every afternoon of his dialysis treatments for the rest of the summer. We talked, and we played some games, and we did some homework. It was the same, although sometimes Hezzie would bring up his dad. Soon, he was joking and giggling again, and the light was back on in his dancing eyes. Despite the pain and shock of losing his dad, he was so remarkably resilient, stubbornly joyful.
On my last day volunteering that summer, I felt so much guilt - I was able to just walk out of that dialysis center and not return the following week, a luxury that couldn’t belong to Hezzie. I apologized, but Hezzie wasn’t bitter or upset - he made me some art to bring home. It lived on my closet door until I went to college.
Seasons passed, and one day, my mom sent me a newspaper clipping - Hezzie was an honorary member of a local college basketball team. He was standing there, beaming among the players, obviously proud to be featured in The Buffalo News with his friends. I taped the newspaper clipping to my whiteboard, where I was dreaming up Folia - a way for people like Hezzie, and my brother, to have control of their symptoms and treatments, to make more space for a full life.
Life had gotten busy, but I hadn’t forgotten Hezzie in the intervening years since that high school summer - he was often in my thoughts when I was dealing with something that felt halfway difficult - remembering that really, in the grand scheme of things, everything is always okay, and every day deserves a laugh. I resolved to visit him on my next trip home, but it was too late - just a few weeks later, I heard the terrible news that Hezzie had passed away.
Somehow, he has been gone for 9 years now. But I can see his face and feel that overwhelming sense of peace and existential joy as clearly today, sitting in my office in Boston as a tired mom of 2, as on that first day as a teenage volunteer on the dialysis unit in downtown Buffalo.
I hope my kids can be just like Hezzie. And I hope our work will make him proud.