Billy and the Queen. So when I say this phrase in my head it sounds like “Benny and the Jets” Just so you know. And the picture above is certainly not Billy, and definitely not the Queen. But in the quirky world that is my mind— it is what it is.
I intended to write about something different this week. I made three attempts. Nothing. Each time Billy & Benny came to my mind. So this is the story that gets told today. It’s a core memory. Like Disney’s Inside Out. Joy and Sadness, and everything all at once. It’s a memory that makes me, Lisa, me.
I was diagnosed with Alveolar Rhabdomyosarcoma in 1978- it meant long hospital stays- 5 days every 5 weeks for nearly 2 years for aggressive chemotherapy. At my first admission, I met a boy named Billy. Billy was a year or so younger than me – diagnosed with a large tumor in his belly. He was from Haiti, and the swollen belly that is associated with starving kids turned out not to be starvation after all, but a ginormous tumor. Billy was taken in by an american family and given treatment at my hospital. He lived there full time. For over a year, he lived there.
Billy was everything I was not. He was fascinated with American food, eager to eat it – even if it came right back up later. He would race down the hallway on his IV pole, play with toys, and laughed a lot.
I became sullen. Stopped talking, and stopped eating. I wouldn’t let the nurses bring the food tray in my room for the smell of it. I had to be scolded to leave my bed so the sheets could be changed.
Billy and I both stopped treatment around the same time- I stopped in March 1980. Billy and I both suffered a recurrence around the same time -I recurred in June of that same year. I didn’t see Billy much after that- I’m not sure where he was. I was either outpatient or in ICU. Both of us were very, very ill. My chemotherapy was discontinued early November 1981, my 6th grade year – too many complications, illnesses and “failure to thrive.” My parents took me home and I found my way back to life. I made it.
Fast forward 18 months to the spring of 1983. 7th grade! Two critical things happened. I had a little procedure on my ear and upon admission to my old home the cancer ward, I found out Billy was dying. His dad had arrived from Haiti after these 4 years to say good-bye to his cheerful, beautiful boy. I caught glimpses of him when the door opened and shut. I was shocked, sad, curious as to why it was cheerful happy Billy and not me. You see, I had never spoken a word to Billy, not one, not ever.
The second thing that happened was that the Queen was coming to our hospital, and I was one of the kids she was going to greet. All of the celebrities running around like fools, donating money, wanting to see us kids like zoo animals. This was wayyyyyy before Make-a-Wish had found our cancer ward. This was the ward for Lost Causes. And then the instructions for meeting HRH. Don’t speak unless spoken to, don’t expect to be spoken to, and for goodness sake don’t reach out a hand, HRH doesn’t shake hands- her hands hurt with too much shaking.
And, the topper? she wasn’t even going into the sick ward, we were positioned in the dentists chair, and the rooms no one really used. Forget about the rooms where people were hanging out alone and visiting hours were from 10-12 and 2-6, parents included.
As her majesty stopped by my room and murmured something, I just had the thought that she was trapped too. I don’t know what I meant by that thought. Because now I waver between a kind of “everyone has a part to play” and angry a thought like come on…. kids are dyin’ here and the four kids who you’re greeting can’t give out a hello?
Nonetheless, these two memories are intertwined and juxtaposed so tightly into my psyche I am not sure I even understand it. That 2 people I never spoke with could impact this life so profoundly is very curious to me.
Today, my take-away is that telling my story is important, because those kids lives were important also. Their stories live on when I speak them. Secondly- We do all have a part to play, let’s do our part the best we can.