Inside Hudson Pickle

by Yolanda Ridge

  “That’s because it is,” Willow said sharply. She took down her poster.

  “Yeah,” I said quickly. “There are lots of cool careers here.”

  “How would you know? Have you looked around?” Willow’s hands were on her hips as she stared down at the box she’d put her poster in. “You seem kinda out of it. You walked by here three times before stopping.”

  “I’m sorry.”

  “For what?”

  “Being a jerk.” I hung my head. “For the comment I made about being tall … for everything.”

  Willow dropped her hands and looked at me with an expression I didn’t understand. Sympathy? Disgust? Something else?

  She wasn’t saying anything, so I started to yammer, “I don’t think you’re too tall — not at all — in fact it’s one of the things … It’s just that my height got me cut from hockey, and I’m still kinda mad about it. Plus, I found out some stuff about my dad … and there’s this disease I probably have. Or I guess it’s a sickness. Well, more like a kind of condition …”

  Willow put her hand on my arm. “You’re sick?”

  My skin tingled under her touch. “Sick? No — not really.” I wasn’t sure why I’d brought that up. As an excuse? Or because I really wanted to talk to Willow about alpha-1?

  “What, then?”

  “Well, it’s complicated. I’ll tell you more, later. Right now, I have to go catch a ride with Trev.”

  “Oh, okay.” Willow picked up her display mailbox.

  I could still feel a tickly pressure where she’d touched my arm. “Do you need help with that?”

  “I think I can handle it,” she said, puffing out her chest. “After all, I did make the senior basketball team.”

  “Oh.” The wave of contentment I’d been riding since E. O.’s compliment crested and crashed. “Uh, congratulations.”

  “Thanks!”

  Jealousy flooded through me, followed by shame. I’d been so focused on myself that I hadn’t thought about whether Willow had made the team. Still, the thought of basketball and my own failure was so painful that I turned away.

  “Hudson?”

  “I’ll, uh —” I swallowed hard. “See ya later.”

  And I walked away, forcing myself, once again, not to run.

  Chapter Twenty-Three

  “I’ve reviewed the autopsy.” Karen Ferenci, the genetic counselor, handed Mom a thin file folder.

  Mom reached across the table and took it. She opened the folder just enough for me to sneak a glance at the name on the medical record. Darwyn Novak. “I don’t need to read it,” she said, slamming the folder shut again.

  “Can you just tell us what it means?” asked Uncle Vic. The three of us were lined up in a row across from the genetic counselor, Mom sandwiched between Uncle Vic and me. The room was about the size of a janitor’s broom closet.

  Karen cleared her throat. “Darwyn died of obstructive jaundice —”

  Uncle Vic interrupted. “In English, please.”

  “It’s the type of liver disease that can affect babies with alpha-1,” said Karen. “Obstructive jaundice can be caused by other things, too, but now that we have the results of your genetic test, Victor, we can conclude that Darwyn had alpha-1, as well.”

  Uncle Vic cracked his knuckles. “If Darwyn had the same disease as me, why don’t I have liver problems?”

  “Good question. The answer’s a bit complicated,” said Karen. “Basically, different changes to the gene lead to different forms of the protein being produced —”

  “Or none at all,” Mom chimed in, like the smart kid who knows the answer before the teacher asks a question.

  “Right.” Karen pointed to the family tree she’d drawn with circles for women and squares for men. Uncle Vic’s square was filled in because he’d inherited two nonworking copies of the alpha-1 gene. Karen had filled in Darwyn’s square just before she’d started talking about the autopsy. “Different changes — gene mutations — lead to different symptoms.”

  “Plus, other factors,” Mom said, determined to be the annoying class genius, “like the environment.”

  Karen nodded. “Mainly cigarettes. If a smoker has alpha-1, they will typically develop respiratory disease in their forties or fifties. If you don’t smoke, symptoms can be delayed until sixty years of age or older. In fact, there are some individuals with alpha-1 who never develop symptoms at all.”

  “I used to smoke, but I’m not even close to forty, and I have lung damage already,” said Uncle Vic.

  “There are other genetic and environmental influences, most of which we don’t understand.” Karen pointed to a graph that meant nothing to me.

  “So what do we know?” Uncle Vic’s fingers fidgeted over the table as though they were plucking at invisible guitar strings.

  Karen smiled, making her eyes disappear into her face. “For a person with alpha-1, the incidence of lung and liver disease increases with age. We can reduce the risk of disease through lifestyle management and, in some cases, more intensive treatment —”

  “Like what?” demanded Mom. “Intensive how?”

  In a reassuring voice, Karen told Mom about the option of a liver transplant and something called augmentation therapy. But I wasn’t listening to any of her CSI lingo — I was focused on those words: lifestyle management.

  “What does lifestyle management mean?” I asked when I thought Karen was done — or at least close. “Can I still play sports?”

  “Of course,” she answered. “Exercise helps keep the lungs healthy. We actually recommend physical activity to people with alpha-1.”

  Score one for the good guy. Not that it mattered — I’d already been cut.

  Still, I psyched myself up to ask one more question. The big one: “What about firefighting?”

  “What about firefighting?” Karen repeated, looking a little confused.

  “Can people with alpha-1 be firefighters?”

  “Well, part of lifestyle management is avoiding exposure to smoke and other environmental toxins, like mineral dust and gas. Also, occupational pollutants such as fumes from —”

  Cutting her off, I said, “So the answer is no.”

  “Let Karen finish, Hudson.” Mom squeezed my knee underneath the table.

  “I probably wouldn’t recommend a career in firefighting for someone who was affected,” Karen said slowly, “but —”

  “Never mind. I knew it.” I pushed Mom’s hand off my knee. If this were a boxing match, then the news about firefighting would have been the knockout punch.

  The clock on the wall ticked loudly in the suddenly silent room, as if it were counting down to detonation: ten, nine, eight …

  My future was blowing up all around me.

  “Can we talk about the risks to Hudson?” Mom pursed her lips. “I think there’s some confusion …”

  I stared at the empty square with my name underneath it and tried to ignore her.

  “Okay, let’s sort this out.” Karen’s speech was calm and steady, like a coach during a post-loss press conference. She pointed at the half-colored circle and square that represented my grandparents on the family tree. “Your grandparents are carriers. They each have one nonworking copy of the alpha-1 gene. They aren’t affected like your uncle because they still have a working copy of the gene. For the child of two carriers, there is a twenty-five percent chance of inheriting two working copies of the gene, a fifty percent chance of inheriting one working copy of the gene —”

  “— and being a carrier like their parents,” I added.

  “Yes, and a twenty-five percent chance of being affected.”

  “And being sick like me.” I wanted to grab the pencil out of Karen’s hand and fill in my square so we could get this over with.

  “No, you have a twenty-five percent risk of having alpha-1. But
there’s a seventy-five percent chance you don’t,” Karen said.

  “You don’t have to lie to me.” I pulled at the Buffalo Sabres jersey I’d worn for good luck, even though the sleeves were too short for me. “I know I’m affected. I have asthma.”

  Confusion spread across Karen’s face. “But asthma is not part of alpha-1.”

  “Of course it is,” I insisted. “Asthma is genetic. Alpha-1 is genetic. And they both affect the lungs.”

  The genetic counselor leaned forward. “Asthma is common. Alpha-1 is not common. And, yes, they both have a genetic component. But the two are not connected.”

  I stared at her in disbelief. “For real?”

  “For real. The chance of you being affected with alpha-1 is twenty-five percent.” Karen looked me in the eye as though she were begging for a truth point. “You seem like a sporty guy, so I’m going to give you an analogy.”

  “A what?” The switch from a science lesson to vocabulary had happened too fast — and neither one was my specialty.

  “If you were betting on a game, the odds would be stacked against you being affected with alpha-1.”

  I let that sink in. I’d be pretty confident going into a game with only a one-in-four chance of losing. But still, nothing was ever certain until the score was final. And really, it all came down to fifty-fifty — win or lose — I either had it or I didn’t. “I want to be tested, like Uncle Vic.”

  “Genetic testing is not simple,” Mom said.

  “It’s just a blood test,” I shot back, crossing my arms over my chest. At least some of my research was paying off.

  Mom nudged my arm. “There are things to consider — like insurance.”

  Karen sorted through her pile of papers and pulled out a colorful, laminated pamphlet. She began to read out a list of reasons not to get tested: “Your ability to get health and life insurance. Genetic discrimination. Social and psychological consequences …”

  “Don’t you have to tell those blood-sucking insurance dudes about family history anyway?” asked Uncle Vic.

  “A positive predictive-test result gives a higher and far more definitive risk than family history. So some insurance companies might charge a higher premium because of a family history, but you can be denied insurance altogether based on a genetic test result.”

  “That should be illegal,” Mom muttered.

  Karen referred to another chart in the pamphlet. “In some cases …”

  Without listening to what she was saying, I waited for her to stop talking. I didn’t want to see another chart or picture. Missing school no longer felt like a bonus — this entire appointment had been one long classroom lecture. “But Uncle Vic got tested.”

  “Testing people who already have symptoms can help us with treatment options and prognosis.” Karen pointed at another page in the booklet. “But testing of minors without symptoms has its own set of considerations.”

  “So when can I get tested?”

  “Not today.” Karen folded her hands together and rested them on the table like a judge reviewing a case. “There is still a lot of information for your family to process and a lot of unknowns. In ten years there could be a cure for alpha-1. Or there could be information from your genetic test that we can’t predict at the current time.”

  I could feel Mom square her shoulders, ready to tag team with Karen if necessary.

  “What I need you to get from this appointment is that your chance of being affected is only twenty-five percent.” Karen wrote the number down on a piece of paper and circled it. “And that most people with alpha-1 can have a very high quality of life as long as certain precautions are taken. Maybe we can introduce you to some kids who are living with alpha-1 …”

  Whatever fight I had left evaporated with the mention of other kids who already knew they had alpha-1. What would it be like to know that about yourself? Having lived my life in the dark, I’d always wanted to know more — but was it possible to know too much? I shook my head.

  “So, I guess we’re done for today?” said Uncle Vic.

  “Do you have any more questions, Hudson?”

  I shook my head again.

  But Mom wasn’t done. “What about these precautions? Preventative measures? Lifestyle management?”

  “Mostly, it’s the same as what you would do for asthma.” Karen’s eyes did their magical disappearing act again as a smile spread across her face. “But I’ll send a letter to your general practitioner with some surveillance recommendations as well.”

  “So, we done here?” repeated Uncle Vic.

  “Not quite,” said Karen. “We still need to talk about Martha’s risks.”

  I looked at Mom. There were tears in her eyes. My stomach turned as I realized how selfish I’d been, ignoring her feelings and thinking only of myself. Again.

  “We already know that I’m a carrier,” said Mom, wiping her cheek with the back of her hand. “That it’s all my fault that Darwyn was affected, and now Hudson —” Her voice cracked.

  “This is no more your fault than it was your mom’s and dad’s,” Karen said gently. “Everyone inherits a few nonworking genes, and alpha-1 is one of the more common ones.”

  “And you only find out you’re a carrier if you have kids with someone who has the same busted-up gene.” I was trying to show I’d been paying attention to make Mom feel better, but as I said it, I realized I really did understand. “My dad’s a carrier, too.”

  “Good point, kid.” Uncle Vic’s head swiveled back and forth between Karen and Mom. “He should be informed. He might have other kids.”

  I shuddered. Just when I thought I finally knew what was going on, here was another curveball. I could have a half brother or sister out there somewhere.

  “Yes, he should be informed,” said Karen. “For the sake of his children, but also for his own health. We know he has one nonworking copy of the alpha-1 gene, but he could have two.”

  “So, that would mean that he could be affected, too,” said Uncle Vic.

  “Hey, wait!” A thought worse than the possibility of half brothers and sisters hit me like a sucker punch. “Doesn’t that mean Mom could also be affected?”

  “It’s unlikely, but we have to consider all possibilities,” said Karen.

  “I don’t have any symptoms,” said Mom.

  “You are only thirty-five.”

  Mom pushed her fingers over her eyes. “Why don’t you two go for a walk while Karen and I finish up?” she said to Uncle Vic.

  “You sure?” Even though Uncle Vic sounded doubtful, he was already pushing himself away from the table.

  “This is what I want,” said Mom. “I just need to process things in my own way. We’ll talk about it later.” She smiled at me. “Okay?”

  “Okay.” I wanted to stay and support Mom, but I also wanted to respect her need for privacy. I’d been so absorbed in searching for the parent who’d left that I’d ignored the feelings of the one who’d stayed.

  Uncle Vic opened the door. “Come on, kid.”

  “Thanks, Mom.” I leaned over to give her a half hug. Her tears were gone.

  “Vic, Hudson, please call or email if you have any questions,” said Karen. “And we’ll set a follow-up appointment in a year’s time.”

  Scraping my knees under the desk, I awkwardly unfolded myself from the chair. As Uncle Vic and I left the room, I almost felt like a prisoner escaping a jail cell.

  Except I knew that my family would never be free from alpha-1.

  Chapter Twenty-Four

  When we got home, I turned on my laptop and saw a message from Willow.

  Missed U @ school 2-day. CU @ the dance 2-nite

  I really didn’t want to go to the dance.

  But I really did want to see Willow.

  I called Trev, hoping to convince him to come with me. I figured he
’d want to go to the dance about as much as he wanted to go to the dentist. But to my surprise, he said yes. Another thing I’d missed in my pathetically self-absorbed state: there was a girl he liked in his math class.

  “Plus, it’ll give you a chance to dance with Willow,” Trev said when he was finished telling me about the math girl.

  “Willow’s just a friend, Trev.”

  “Whatever.”

  “And, hey, listen.” Thoughts were flying at me like balls at a net during the pregame warm-up. “Have you talked to Coach yet?”

  “Nope, I didn’t get a chance today. Why?”

  “I need to talk to him, too.”

  “About what?”

  “About cutting me.” I felt a strength inside me that I recognized, if only slightly, from my hockey days. “If it’s because of my asthma, he needs to know that’s not fair. I need to convince him I have what it takes.” The genetic counselor had given me a second chance. Maybe Coach would, too.

  “Right on.” I could almost see Trev smiling through the phone.

  “Do you mind if we get to the dance a bit early?”

  “Why not. I’ll be ready to go when you are.” Trev covered the phone for a moment, and I could hear mumbling in the background. “Gran made cabbage rolls.”

  “I’m on my way!”

  •••

  I grabbed my go-to Halloween costume — a Ghostface mask — and headed downstairs. Mom and Uncle Vic were sitting in the living room, talking quietly.

  “Are you heading out to trick-or-treat already?” Mom asked.

  “No, there’s a dance at school. Is it okay if I go?”

  “Sure, but could we talk first?”

  I pulled on my toque. “Trev’s waiting.”

  “It’s important.” Mom patted the sofa next to her.

  “Okay,” I said, but I didn’t sit down. The last thing I wanted to do was get trapped in another long discussion about alpha-1. I decided to make the first offensive move. “I have stuff to say, too.”

  I told them about being cut from basketball. About how I was going to talk to the coach.

  Uncle Vic whistled. “You go, kid!”