From second through fifth grade, I mastered the art of being sick. I got out of school, soccer practice and piano lessons so that I could be the child I wanted to be — not sick, but loved, cared for.
Here was my recipe:
1. Wake up.
2. Feel anxious about the day to come (this was natural).
3. Let the anxiety morph into a sickly pallor.
4. Bolster suspected illness with refusal to eat Life cereal (it was always plain Life cereal; that’s the kind of kid I was).
5. Gulp a mouthful of hot tea.
6. Place tea underneath tongue just so.
7. Insert thermometer beneath tongue.
8. Wait for Mom to enter, her caring furrowed deep in her brow.
9. 101 degrees Fahrenheit = no school today.
Damn, I was a manipulative kid; I know that now. One year, for the entire month of April, I didn’t go to my weekly piano lessons once. They upset me, but I attributed my tears to a pollen allergy that somehow only acted upon the walk across the street to my piano teacher’s home. I played sick more often than I actually was sick. Although I was too young to know what “manipulative” meant, I felt guilty about pretending.
Then, in fourth grade, I met you, Michael. And you shook me.
You never got to play sick, because you actually were sick — bald from chemotherapy, masked to ward off colds. Even on warm days, you’d wear a bulky sweater, as if you were always trying to protect yourself from the permafrost on some faraway frozen tundra.
The real frozen tundra, for you, though, was the cruelty of kids. Kids afraid to touch you. Kids calling you “Baldy,” “Grandpa,” “Four-Wheels.” Kids stealing your wheelchair when you were too tired to walk.
You never cried that I saw, and you took the cruelty with humility and kindness. You sat in your wheelchair in the back of the classroom, the textbook open on your lap, rarely answering questions — except for the hardest ones that stumped the rest of us. We were all jealous of your academic prowess, which didn’t ease the cruelty. You’d sit in your wheelchair, head lowered in monk-like silence, as insults rained down around you. You had terrible handwriting (which I could relate to), but you wrote sweet birthday cards to the few kids who treated you well, or at least not too meanly.
Somewhere I still have the card you wrote me. Its wobbling scrawl said: “Happy Birthday Rayn [sic], I hope you have a great day. Thank you for being my freind [sic],” with a hand-drawn picture of us as smiling stick figures standing next to each other. I didn’t invite you to my birthday party, because I was afraid of what the other kids might think, but I did keep that card.
One of my fondest memories of you comes from the time soon after you’d started using a wheelchair. I felt awkward and uneasy about it, which I guess you noticed. When we were out at recess, you commented mock-regretfully, “Well, I guess my tetherball game is over.”
We both knew that neither of us had any tetherball game, to begin with. I doubled over with laughter, my discomfort melting away, while your eyes twinkled with humor and relief.
We didn’t talk about your sickness much. My mom told me it was leukemia, but I didn’t really understand what that meant. And you and I were much too busy talking about baseball, constellations, Pokémon, and science. You listened so well, and you never complained to me about being bullied or missing out on your childhood. Without having the words for it at the time, I saw and appreciated your quiet kindness.
I also saw that your mom was either dead or gone: She wasn’t there to furrow her brow, like my mom did, and make you feel well again. I read the depth of that loss in your father’s gaunt face and haggard eyes when he picked you up after school.
I saw it, too, each year on Halloween.
Every Halloween, your dad would dress as a scarecrow and sit perfectly still on your front porch, holding a bowl of candy. His eyes were perfectly suited to the costume, albeit a bit too hauntingly real.
We lived just two blocks apart, and I loved to come over and watch as kids swaggered up to your house, their confidence fortified by the masks and costumes transforming them into whoever they dreamt of being.
I was Sammy Sosa one year, my slugger slung lazily over my right shoulder. While taking a couple of practice swings, I’d watch the kids stop a few steps from your dad’s porch, then cautiously advance, like mice approaching a mousetrap.
Just as they reached for the candy of their choosing — SNAP!— he’d grab their wrists, and a jolt of surprise-fear-wonder-thrill-hate-terror would ripple through their bodies and emerge as a scream.
They’d get their candy and scurry off, and he would recoil, smile and wait for the next victim. It might have been the only time I saw him smile.
I sometimes wondered if you felt like your dad in his scarecrow costume. Kids treated you the same way — as if you were scary, not to be touched. At recess, they’d skirt around you, looking the other way, the awful realness of your condition too heavy to contend with.
One Halloween, I finally screwed up my courage and walked up to your dad in his scarecrow stillness. I knew you weren’t trick-or-treating that year; you were too sick. You were alone in your bedroom, and I worried that you must feel sad because maybe Halloween was your favorite holiday — the one day when you could be normal when kids wouldn’t make fun of your bald head and wheelchair. In previous years, you’d donned an Einstein wig and carried a cane, which you used less to walk with than to whap trick-or-treaters who couldn’t figure out what “E” was equal to.
This year, I walked boldly up to the scarecrow, but instead of taking something from the candy bowl, I placed in it — cautiously, my fear intense, but my sense of what to do stronger — a king-sized Twix bar (your favorite).
The scarecrow didn’t stir.
I wonder to this day whether your dad was on the porch that Halloween, and what you thought of the Twix bar. Maybe your dad wasn’t even there, and some other kid came along and scored the king-sized treat intended for you. (That was the brilliance of your dad’s scarecrow ruse: A straw scarecrow packed just so, and immovably still, looked just like him. Even if it never moved, the kids would be just as scared.)
I didn’t know if your dad was there that night. And I’ll probably never know, because soon afterward, you moved away to someplace with a bigger hospital — at least, that’s what my mom told me.
Ryan Nesbit is a medical student. This piece was originally published in Pulse — voices from the heart of medicine.
Image credit: Shutterstock.com