Invisible

ONE

MY GIFT AND MY CURSE

In first grade, I was drawing a koala bear for a book report. I finished my drawing and turned around to see how everyone else’s koala bears compared to mine.

Mine was better.

A LOT better.

My teacher was making the rounds and stopped at my desk. She asked if she could show my drawing to the class. There were “oohs” and “ahhs” when she held it up. There were also some kids who crumpled up their koalas after seeing mine. It was a little embarrassing to get so much attention, but at least it was for something I was proud of.

Later that same year, I’d won a citywide poster design contest that was meant to encourage kids to read. My teacher had encouraged me to enter. I won a plaque and two hundred books for my school’s library.

After that, I started drawing all the time. I always had several sketchbooks on the go, filled with my doodles and ideas. I drew people, animals, whatever was around me. If there was nobody around, I’d make up my own characters and write stories to go along with them. I had no interest in coloring books because I didn’t like staying inside the lines.

I taught myself how to draw by copying artists I admired. Once I figured out how to draw in their style, I put my own spin on things. I’d swipe a nose from Charlie Brown, test out a mouth from Porky Pig, and toss in a pose from Calvin and Hobbes, then I’d Frankenstein them all together into my own mad creation. Some experiments were successful, some were failures. I learned from them all.

I was a sponge, soaking up whatever I could, wherever I could. I bought comic books at the corner store with my allowance. I watched Saturday morning cartoons religiously. I’d pull out the funnies from the newspaper every Sunday. I went to see animated movies whenever they came to our theater.

One weekend my dad and I had just finished watching one of my all-time favorites, 101 Dalmatians. As the credits rolled, my dad asked if I knew what I wanted to do when I grew up. Without hesitation I said, “I’m going to live in California and make animated movies.”

When I was eight years old, I knew what I wanted to do.

I had a plan for my life, and it was all mapped out.

But of course, I wouldn’t be telling you this story if the rest of my life was all candy corn and rainbows. Little did I know, a dark cloud was rolling in. A life-altering, plan-destroying, heat-seeking missile had just been launched . . . and I was the target!

That same year I found my GIFT, I also found my CURSE.

TWO

THE DIAGNOSIS

I hadn’t been feeling well for several weeks. I was losing weight and had a fever that wouldn’t go away. My parents were concerned. My doctor wanted to run some tests. Then he wanted to run some MORE tests. I’ll spare you the gory details but let’s just say, the worst test you’ve ever taken at school is a walk in the park compared to these horror shows. If I had to sum them up in three words, they would be:


YUCK. GROSS! and GET-THAT-THING-AWAY-FROM-ME!!!

Once all the results were in, my doctor decided he wanted a second opinion and sent us to a specialist who could help figure out what was going on. His specialty was almost impossible to pronounce. GASTROENTEROLOGY. It sounded like somebody who should be an expert on gas planets. Then again, my stomach had been gurgling nonstop lately, so maybe the name made sense.

As my parents and I waited for the gassyologist, I sat on the crunchy paper that had been rolled out on the exam table, wearing nothing but my socks and the hospital gown the nurse had given me. I was cold. There was a little kid screaming in the next room. There always seemed to be a kid screaming in the next room at the doctor’s office. There were stencils of flowers and butterflies on the colored walls, but that cutesy stuff wasn’t fooling anyone.

Doctors' offices are scary, no matter how hard they try to convince you otherwise.

The gassyologist/specialist/doctor finally entered. He was looking over my chart. For a long time. Had he not read it until now? Or was he rereading it because the results were so terrible that they couldn’t possibly be true? Either way, he was really milking the tension that was already sky-high. Finally, he turned to us and delivered the diagnosis: CROHN’S DISEASE. He paused for dramatic effect.

My mom looked like she’d been hit by a truck.

My dad held her hand and took a deep breath.

“What’s Crohn’s disease?” I asked, looking at them all looking at me with concern.

“Simply put,” the doctor explained, “it’s an inflammatory bowel disease that can affect the entire digestive tract but is most common in the upper and lower intestines.”

Simply put? He sounded like a robot reading from a medical encyclopedia! As the doctor droned on about symptoms like fever, diarrhea, stomach cramps, vomiting, weight loss . . . I started to become distracted by something else. It sounded like a wild boar chewing noisily close by. I slowly turned my head. Only moments ago, the other half of the exam table had been empty, but now . . . A 7ft CREATURE SAT THERE!

It looked like a cross between an ogre and a member of a motorcycle gang. Except instead of a leather jacket, it was wearing a hospital gown just like mine.

As the doctor moved on to the topic of foods I should avoid—nuts, seeds, corn . . .

“W-w-what are you?” I was petrified but tried to speak as calmly as possible to avoid agitating the creature.

“I’m your disease,” it said matter-of-factly, and offered me some of its snack. “Corn chip?”

I leaped to my feet and SCREAMED.

“WHERE DID IT COME FROM?” I demanded answers.

The doctor pointed to a poster on the wall. It was an illustration of a healthy person’s bowel. As he proceeded to explain where my disease was located, I imagined a tiny camera zooming down my digestive tract, past my stomach, twisting through my small intestine, snaking down increasingly narrow passageways, and grinding to a halt in a swollen, inflamed land known as . . .

My ILEUM.

It was an evil place covered in angry blisters.

Suddenly, the ground started to rumble. I heard a distant moan getting closer and louder. Then it turned into a full-on roar as a slime-covered hand burst through the wall. The creature pulled itself up from the bowels of the Earth! Or in this case . . .

“Where the small and large intestines meet,” my doctor said.

I couldn’t tell if I was hallucinating or if the creature sitting next to me was real. Why was nobody else freaking out about this thing except me? Maybe I was having a nervous breakdown.

“There’s a cure for this, right?” I was desperate.

My doctor shook his head and calmly explained that I had a “chronic” disease, which meant there was no cure.

“What?” I said. “I’m going to be stuck with this thing for MY WHOLE LIFE?”

I think my outburst snapped the doctor out of robot mode because he seemed more sympathetic as he assured me that there were lots of ways to help manage my disease.

“It’s going to make life more complicated, J.J.,” he told me, “but it doesn’t have to stop you from doing what you love.”

But I’d stopped listening after “There is no cure.”

That afternoon, my parents and I left the doctor’s office shaken and deeply disturbed. My disease skipped merrily along behind us.