Authors: Abby Cooper
My limbs felt like one gigantic scratchy bodysuit. I scratched and scratched through my clothes, but none of the words felt any better. Getting home took a whole hour because I was too uncomfortable to walk the right way, and when I finally made it, Mom decided that I couldn't go out for walks by myself after all. It was just too risky.
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After Mom finished slathering me with anti-itch cream and ran off to call Dr. Patel, I went straight to the bathroom and didn't come out for a long, long time. I hoped if I took a cold shower, it would make the words fade faster. Somehow that seemed pretty impossible, even if I scrubbed with Mom's fancy old-lady soap that could supposedly wash off ten years.
“Hurry up!” Mom pounded on the door. “Dr. Patel was able to squeeze us in. We need to go
now
.”
I stood on my tiptoes on the bathroom rug. I had spontaneously decided to have a contest against myself to see how long I could stand like that before I fell down. Maybe it was babyish, but I didn't care. Sometimes you just feel like standing on your tiptoes (and avoiding the doctor) forever.
Thirty seconds! Thirty-one! Thirty-two! Thirty-three! I was the tiptoe-standing champion of the world! The imaginary crowd went wild! Thirty-four, thirty-five â¦
“Elyse,
now
! I mean it!” Mom called again, a little anger creeping into her voice this time.
How was I ever supposed to become the tiptoe-standing champion of the world when people kept interrupting me and making me do stuff I didn't want to do?
I tiptoed out of the bathroom. It still counted if I was moving, I decided. Thirty-six, thirty-seven ⦠What do you even get if you set a world record anyway? A certificate? A medal? A million dollars? I bet Mom wouldn't be so annoyed if this experiment could get us a million bucks.
“Come on. I know you don't want to deal with this right now, but let's just get it over with.” Mom stood by the garage door with her hands on her hips. She was already wearing her boring mom shoes, her boring mom jacket, and her boring mom hat. Jeg's mom had jackets made out of fake fur and purses decorated with sequins and rhinestones. My mom would never be like Jeg's mom if she kept making these terrible fashion decisions.
I tried nicely suggesting some adorable alternatives as she opened the garage door and I tiptoed into the car. Thirty-eight, thirty-nine, forty!
“Have you ever thought about wearing more colors?” I asked. “Dark reds can be very nice this time of year. And some purple might bring out the green in your eyes.”
“Where are you getting this?” Mom asked.
“
Gurly
magazine. And Jeg used to show me pictures from the fashion shows her parents had in Italy and Prague and New York, and you should have seen all the colors! You might also want to think about dyeing your hair. You're getting some grays.”
“Can't imagine why,” Mom mumbled, looking straight ahead. “Elyse, Jeg's mother may be more fashion-forward, but lately she's also been out of the country three hundred sixty-four days a year and makes her daughter stay here practically by herself so she can have a ânormal' life. Is that the kind of mother you'd like?”
I got the sense that this question had a right answer.
“No,” I said. “I like my mother. I think she would look extra nice in colors, that's all.” Silently, I added,
And maybe if you were cool, I'd be cool like Jeg. And she'd still be going to the field with me instead of the Loud Crowd.
We drove the rest of the way to the doctor's office in silence, listening to the soft hum of the car and the quiet music on the radio.
Mom was way overreacting. I may have had more words on me than ever before, and mostâokay, allâof them were bad ones, but I would be fine. So it hadn't been my best day. Or week. Okay, year.
Whatever.
Dr. Patel was a nice guy, but I only ever saw him when I was itchy, it seemed like, and he wouldn't be able to make it any better. He never did.
“Let's go,” she said, turning off the car. I didn't budge.
“Wouldn't you rather get a snack somewhere? I'm hungry.”
“Elyse. We have an appointment.”
“But I have an appointment with snacks. It's rude to keep them waiting.”
“Now,” Mom growled. I think she was getting a little sick of me. But if she hadn't gone and scheduled an annoying appointment without my permission, we wouldn't have had this problem in the first place.
Most people loved Dr. Patel's because his office looked like a toy store had thrown up. I had always thought it was a pretty bad plan, though. You give kids all these awesome toys for a few minutes, and then all of a sudden it's like,
Sorry, but you need to put the toys down now so we can do a lot of scary stuff to you and probably make you cry.
What kid wants to give up toys for that? What kid wants to give up toys at all? So then you end up with a bunch of sobbing, temper-tantrum-throwing children before they even go see the doctor.
Like I said, bad plan.
Duh
, doctors.
I didn't even bother working on the ten-thousand-piece jigsaw puzzle sitting on the huge round table while Mom talked to the receptionist and filled out some papers. I knew that getting one piece would make me want to get another piece, and there was no point in wanting to get a second piece. There wouldn't be time. There never was. Everybody treated it like such an emergency whenever I came here. It was never just an innocent checkup like the ones everybody else got. Instead of leaving with a sticker or a lollipop, I only left with the same problems I came withâand the feeling that I was nothing more than Dr. Patel's personal science project. All because of one dumb gene.
“You know, if we'd left when I wanted to leave, you'd have time to do a whole chunk of puzzle,” Mom said as she plopped down on a fluffy teal cushion on the floor beside me.
That wasn't true and we both knew it.
“Elyse Everett?”
Mom and I got up and followed the nurse into Dr. Patel's office. The walls in this room were painted bright red, with other little decorations all over the place. You were supposed to think you were in a fire truck, which would be awesome if I were five. Okay, it was still awesome when I was eight, but I was drawing the line right here, at twelve. Fire trucks are dorky and that's all there is to it.
“So, Elyse, how have things been since the last time I saw you?” Dr. Patel came in and took a seat on a little rolling stool. “I heard from your mom that there was a little emergency today. Roll 'em up, please.”
“No emergency. I'm fine.” I rolled up my sleeves and pant legs.
Mom elbowed me.
“Ow. What? I'm fine!”
FINE
popped up beneath my sock, near my ankle. It felt, well,
fine
.
“She's been doing okay overall,” Mom said, “but I'm extremely concerned about the negative words we've been seeing lately. They seem worse than ever.”
I started playing with the awesomeâI mean, super-babyishâhorn on Dr. Patel's desk as he glanced at my legs and jotted something down on his notepad.
“We're getting through it, though,” Mom continued. “Sticks and stones⦔ Her voice trailed off.
Dr. Patel stopped writing so that he and Mom could both look at me like they felt really, really sorry for me. It was pity. The word wasn't written on their faces, of course, but I knew that's what it was. They thought I was pitiful. I
was
pitiful.
“Yikes!”
PITIFUL
sprang up on my wrist right before both of their eyes.
Oh, no.
I looked back and forth from Mom to Dr. Patel and back again, but neither of them spoke.
“How did that happen?” Dr. Patel asked.
“You're the doctor,” I said.
Mom gave me a look.
“What?” I raised my eyebrows. “He is! I don't know how it happened, I swear.”
“Could it be possible ⦠that you're calling yourself some of these names? In your mind?” When I didn't reply, Dr. Patel sighed. “Some of my colleagues have reported this in other cases around the world. I probably should have warned you about it, but I wasn't sure if or when it would happenâthe age of onset ranges dramatically. We don't understand all of the details yet, but we're fairly certain that it can be a normal symptom for some people with CAV.”
Well, super. My being “normal” made Mom look like she was going to cry any second.
“Have you had any other issues lately that I should know about?” Dr. Patel asked.
“Elyse has been wearing long pants and shirts with sleeves all the time,” Mom said. “I thought it was just a phase, butâ”
“It's been cold out!” I snapped.
“You started in June. It was cold then?”
I paused. It was kind of hard to argue that.
“She also went to a
meeting
not so long ago,” Mom continued in a hushed voice, like the meeting was the disease, not CAV. “There was a competition we weren't expecting, and while she came in a very close second, she didn't win. And then this morning, she went for a walk. I don't know exactly what happened.” She glanced at all the words that hadn't been there yesterday. “But I don't think it was the most fun she's ever had.”
“People go to meetings,” I said. “And take walks. It's not that crazy.”
Dr. Patel scooted closer to get a better look at my words.
DUMB
was still there. So were
IDIOT
,
LOSER
,
STUPID
,
UNLOVABLE
,
WORTHLESS
, and
FREAK
, the whole crew. They were going in all different directions, and some were bigger than others, but they were all thick, dark, mean, and itchy, and felt like ridiculously scratchy clothesâthe ones that also have ridiculously scratchy tagsâI couldn't ever take off.
Mom had a lot of nerve not wanting to wear colors. Some of us didn't have a choice what color we wore. Some of us had to wear black on our arms every single stupid day.
“This is a big change from when I saw you back in the spring at the end of the school year,” Dr. Patel said. He picked up my left arm and dropped it in his. “You seemed really happy then, and you were in shorts and a T-shirt, if I recall correctly. Does this bother you?” He traced
STUPID
with his index finger.
“It just makes me want to scratch it,” I said, jerking away.
Mom grabbed my hand and held it tightly so I couldn't actually scratch my arm. Well, that sure wasn't going to help anything.
“I'm sorry,” Dr. Patel said, and I could tell by the way his eyes got big that he really was.
Still, when I blinked, tears stung my eyes. When you tell adults your problems, they're supposed to help you solve them. That's the way it works. Sometimes that was how it happened here, but usually one problem just led to more problems.
“You've got to try to cut back on the scratching. I know it's hard. But that doesn't seem to help your discomfort.” He scooted his stool back.
“Elyse, sixth grade can be a tough time,” Dr. Patel continued. “Things are changing. People are changing. Your body is changing.”
Ew. I squirmed in my seat. That was one change we really did not need to discuss.
“Try to stay positive. I know it's hard. I'm going to advise that you use ice, extra-strength Tylenol, and maybe a little more prescription anti-itch cream than usual. Be sure to rest, too. And no heavy lifting or driving. But that shouldn't be too much of a problem yet.” Dr. Patel smiled slightly. His eyes were still glued to that
UNLOVABLE
part of my wrist. “And maybe only call yourself nice names.”
You think?
“It's too early for this,” Mom said quietly.
“How is it too early? It's two o'clock.” I glanced up at the clock that looked like a fire truck's tire.
“Too early in your life, I mean,” she said to me, and then to Dr. Patel, “I'm afraid it's only going to get worse over time. Middle school and high school can be so socially and emotionally challenging. I'm worried for her.”
Mom patted my leg, and I jerked it away as fast as I could. I wanted to turn the room into a real fire truck and hit the gas, speeding with the siren blaring so everyone would know to get out of my way.
“I understand your concern,” Dr. Patel replied. “But whatever comes our way, we'll handle it together.”
I looked back and forth between the two of them. So I was supposed to use ice and not drive. Fine. Done. As usual, this had been a waste of time. I could be up to, like, ten thousand seconds of standing on my tiptoes by now. I would never set any kind of record at this rate, except maybe a record for most annoying doctor appointments.
Mom said, “I think it would be nice for Elyse to have someone she could talk to who really understands what she's going through. Moving here so Elyse could see you was the best decision we ever made. But now that she's a little older, it'd be great for her to connect with someone about CAV besides her doctor, don't you think? Can she meet your other patient?”
My ears perked up. That actually
would
be kind of interesting. Dr. Patel had mentioned his other CAV patient every now and then, but “the other CAV patient” had always sounded like someone who wasn't quite real, like a ghost or a scarecrow or the imaginary rhinoceros friend I had when I was little. For some reason, I never really imagined the other CAV patient as a person just like me.
“I'd love to arrange that,” Dr. Patel said. “Unfortunately, I can't do so without the patient's consent, and she has clearly stated multiple times that she wouldn't like to be contacted under any circumstances. I'm sorry.”
“So it's a
she
!” I said. That narrowed it down a little. I could work with that.