by James Bird
I put one foot up on the bar behind the wheelchair, I grip both handles behind her as tightly as I can, and I push off. We begin to roll, so I lift my other foot up and set it on the bar. I feel the cold air push against my face and hair. I close my eyes and hold the image of Orenda in my mind. If I die, I want hers to be the last face I ever see.
We pick up speed, and my stomach drops. Orenda lets out a loud battle cry, which makes me forget about the danger ahead and brings a smile to my terrified face. We race down the ramp and careen through the grass at a way faster speed than I anticipated.
I open my eyes, I see the fence coming straight for us, but we are going much too fast to stop. I decide to embrace it. Like she says, “Fear ceases to exist once you confront it,” so I let out the loudest battle cry I can before we collide into the fence.
As the front of the wheelchair hits, we are launched off of it and flung forward. We both slam into the fence and hit the ground.
I turn my head to check on Orenda, but she is far from needing help. In fact, she is lying on her back, laughing hysterically. I sit up and watch her laugh. She looks so happy.
“You have grass in your hair,” she says, and erupts in laughter again.
I reach up and pull a patch of dirt and grass from my head.
Foxy rushes up to us. “What just happened?” he asks as he helps his daughter up and places her back into the wheelchair.
“I tried to fly, Papa. But I can’t yet,” she says to him.
Foxy turns to me and offers me his hand. I take it, and he hoists me up with one hard yank, bringing me face-to-face with him. “You let her do this?”
“Fifteen. She won’t know if she can fly until she tries,” I say.
Foxy sighs at my response, but Orenda doesn’t. Instead, she smiles at me as if that was the greatest thing ever said. She thinks I finally believe her about the whole butterfly thing. Which, obviously I don’t, because that’s impossible, but it feels really good to make her feel really good right now.
“Are you hurt?” Foxy asks her.
“No, Papa. I feel great,” she replies.
“You’re fixing this,” he says to me, and points to the fence.
Wow. We broke the fence. That’s two fences I’ve broken now since I’ve been here. “Fifteen. Yes, sir.”
Foxy begins to wheel Orenda back toward the house, but she stops the wheelchair abruptly by grabbing both wheels. She spins it around and looks at me. “My rebel,” she says, and releases the wheels.
“Takes one to know one,” I say.
Foxy continues pushing as I watch them enter the house. I feel a knot forming on my forehead and rub it. Ouch. I hit that fence harder than I thought. Maybe it was my head that broke it.
CHAPTER TWENTY-SEVEN
ANIM ALS (25)
My new dad. That’s still weird to me. I know he’d love it if I called him Dad. Maybe Aji did, but I still need to get to know him a bit more. For now, I’ll just call him Ronnie. For damn sure I’m not calling him Spicy.
Ronnie said I can skip school today so he and I can do some male bonding. As cheesy as it sounds, I’m still a kid, I’d do anything to skip school. Plus, it kinda sounds cool, since my dad and I never really bonded. Bring it on.
I imagined we’d do what men do with their sons on TV—you know, like shoot at targets with a gun, toss a ball around the yard, or maybe go camping somewhere deep in the forest, but nope. We went to the hardware store.
We’re now in Orenda’s yard, and he’s sitting on the cooler, just watching me try to figure out the correct way to repair the fence.
“You broke it, you fix it,” Ronnie says.
I’ve been out here for an hour, and I’ve accomplished absolutely nothing. It’s not funny, but he sure thinks it is. He watches me try to line up the wood evenly while trying to balance the nails before I swing the hammer. I’m hopeless. I have managed to drop the same nail eight times now. I guess he thinks I’ve suffered enough, because he finally joins me and takes the hammer from my hand.
“Don’t they have fences in California?” he asks.
“Yeah, millions of them. But once they break, we just leave them like that. Everyone’s too busy to fix things,” I say.
He twirls the hammer in his hand like a gunslinger with his revolver and tosses a nail into the air and catches it between his lips. I’m impressed. And he knows it.
“Watch and learn, buddy,” he says, and grabs one of the new planks of wood.
I take a step back.
He gets to work. By the looks of it, he’s broken many fences in his day. He’s good at everything, it seems. I don’t know who the better catch is, him or my mom. This town must seethe with envy whenever they are seen together.
He tries to show me how to properly repair the fence, but my eyes repeatedly drift from Orenda’s back door and up to her tree house. I haven’t seen her at all today. And I don’t think she’s grounded or anything like that, because by the looks of it, she has Foxy wrapped around her finger. He’d do anything to keep her happy, even immediately forget the danger she put herself in last night.
“They left early this morning,” Ronnie says to me, snapping me out of my thoughts.
“Twenty-four. Do you know where they went?”
“You want the truth, or you want their version of it?” he asks.
Finally! Someone is going to tell me what’s really going on and not replace every single detail with some magical explanation.
“Forty. I’d love the truth for a change,” I say.
Ronnie looks around, making sure we’re alone.
“All right, but you can’t tell your mama I told you what’s what, you hear?”
“Fifty-four. I won’t say a word,” I say, and drop to my knees beside him, so he can whisper.
“They went to the hospital,” he says.
“Twenty-one. I figured that, but why?” I ask.
“Good luck counting this one … amyotrophic lateral sclerosis,” he says slowly.
The words scrape against my brain. I count each letter as it moves forward, like huge trucks at a toll road, waiting for their turn. “Fifty.”
“Damn. That’s impressive, buddy. Also known as ALS.”
I remember learning about ALS back in California. It was when the world came together and did all those ice bucket challenge videos. Our teacher did one and had us film it and post it online. It went viral, too.
“Thirty-eight. Orenda has ALS?” I ask, more to hear the question out loud for myself.
“Her mother did too. But goddamn, can those women fight! I mean, her mama fought tooth and nail to the very end. That was a sad day. I was deployed soon after. Then Aji was deployed. He hated leaving Orenda here, all alone. But she has you now.”
His words hit me like a ton of bricks. One thing I remember from learning about ALS is that there is no cure for it. My brain drops into my throat, and my throat sinks into my heart, and my heart drops into my gut. Orenda is dying. For real dying.
As Ronnie’s letters pile into one another in my head, they turn into horrible little numbers and crawl across my tongue. I just need to vomit them out and breathe.
“One hundred and eighty-five,” I say, and gasp for air.
Ronnie looks at me like I just resurfaced from the bottom of the ocean. He pats my back and nods. I know that nod. It’s a “sorry for talking so much” nod, but I don’t want him to stop. I want to hear more. Everything. Anything.
“Two people in one family getting it … The chances were one in a billion,” he adds.
“Fifty-six. One thing I know about Orenda … She’s a one in a billion kind of girl. I guess her mama was too,” I say.
“They both are. Some people get lucky. Some people get unlucky. That’s how it goes,” he says.
“Sixty-three. She knows what is really happening to her, right? I mean, she saw her mom go through it, so why does she say she’s turning into a butterfly? Why doesn’t she get treatment like other people? Maybe doc
tors can help?” I ask.
“In the end, does it matter?” he asks.
“What do you mean?” I ask.
“Orenda believes she’s changing. Maybe she is. We don’t know what’s real and what isn’t. None of us do. We guess. Sometimes we’re right, sometimes we’re wrong.”
Sometimes we’re lucky, sometimes we’re not. Sometimes were right, sometimes we’re not. Ronnie looks at life so simple. I don’t know if that’s good or bad. But he does have a point. Orenda is pretty darn convinced she is gonna be a butterfly. But wait … Why would she be at a hospital if she didn’t believe the doctors can help her? Maybe there’s hope. “So why is she at a hospital, then?” I ask.
“She’s probably doing what her mom did,” he says.
“Thirty. And what’s that?” I ask.
“Donating her hair to cancer patients. Donating her blood to science. Letting them run more tests to better understand the disease. Even now, when she’s in pain, she hides it. But not only that, she’s out there trying to help the world. Just like her mother did.” Ronnie rises to his feet.
He sees how broken I feel, so he extends his hand to me. I need it. I accept it. He hoists me up to my feet, but I don’t think I can stand. I feel empty, hollow, and weak. I look down and prepare to collapse at any moment.
But this feeling is nothing compared to what Orenda feels every day. Suddenly, my letter counting condition doesn’t seem so bad. I steady my wobbly legs and focus on the numbers in my head.
“Two hundred and four. I know this is a weird question, but I just need to hear the answer for my own sanity. So is she or is she not turning into a butterfly?” I ask.
Ronnie dusts his hands off and gives me a look that I can’t crack.
“Life is strange, kid. I don’t have that answer. No one does but the Father,” he says.
“You mean God?” I ask.
“Father Time. Only time will tell what happens. The important part is to just keep your eyes open, so you don’t miss it,” he says, and walks back toward the opening in the fence to our house.
I scramble his letters into numbers as quickly as I can, so I can ask him another question before he makes it to the end of the yard. A question I can’t ask anyone else.
“Ninety-two, Ronnie,” I yell to him.
He stops. I approach him, trying to figure out how to ask.
“Aji … How did … he die?”
“Aji lost his dad when he was just a kid. But that didn’t stop him from idolizing him his entire life. And rightfully so—his dad was an amazing guy. He was military, like me. Naturally, Aji wanted to be like the guy. He enlisted the day he turned eighteen. His plan was to serve two years and have the corps pay for his college. That dude loved to learn. He was a hell of a soldier too. I was actually here, with your mama, when it happened … And she knew. To this day, I still don’t know how she knew, but at ten twenty-seven A.M. she collapsed on the floor, clutching her chest, screaming your brother’s name. That day we got the official word: His unit went down in a helicopter during training. Eight boys died that day,” Ronnie says, and fights back the pain in his eyes.
I tally up his total and divert my eyes to the fence. I know Ronnie doesn’t want me to see him like this. It hurts too much. I walk back to the broken fence and let Ronnie walk away from whatever emotion he wants to escape.
* * *
Aji loved his dad so much. I hope he’s finally with him now. I hope my mom thinks they’re together, so she doesn’t always have to walk around with a broken heart. Hearts break so easily. Like fences. But not everything that breaks is sad. Sometimes breaking something leads to something better. That fence that I broke and was somehow magically repaired and then magically broken again led me to Orenda. I love that fence. It’s my passage to her, and I need it now more than ever.
I turn to see the other fence, the one Orenda and I broke last night. Ronnie has completely repaired the damage I caused, with not much help on my part. It looks as if nothing happened at all.
Life is weird like that. One minute there’s a gaping hole in the fence caused by two crazy kids crashing a wheelchair through it, and the next minute it’s just a normal fence again. There’s no trace of our crash. No trace of our adventure together. But I know it meant a lot to her. She was testing fate. She was living on the edge. She faced down her illness and screamed like a banshee as we raced toward danger. And we met it head-on. And we lived to tell about it. Her fear no longer exists because she confronted it, and I helped her do it.
I squeeze through the fence and step into my backyard. I realize that Seven is still out with Grandma. They’ve been gone since yesterday. I know I should be worried, but for some reason I’m not. Maybe it’s because if there is one person that I don’t ever need to worry about, it’s my grandma. She’s smart and tough, and has been around long enough to know how to stay alive. But still, what can an old lady and a dog be doing for so long?
I close my bedroom door behind me and hop onto my bed. Ronnie let me borrow his laptop, so I open it and type ALS into the search engine. About three dozen sites pop up. I guess it isn’t as rare as I thought. The next two hours are spent reading all about it. It’s terrifying knowing that Orenda is going through all of this. One of the sites says that no two people with ALS are alike—the signs and symptoms vary from person to person. I wonder if she feels it spreading throughout her body? She must be exhausted. It’s a constant war being waged under your skin. And they list the pain as excruciating. A ten out of ten. How is she so strong? How has she not given up?
I continue reading … ALS begins in the brain and attacks the motor neurons. The most common symptoms are impaired speech, excess saliva, difficulty sleeping, and weakness in the hands and feet. That is why Orenda can no longer walk and why her speech has slowed down and thinned so much. That’s why her hands are giving her so many problems. That’s why she made me paint in the forest, because she physically couldn’t.
I’m so mad that some stupid disease has chosen such a good person to torment. It’s not fair. I used to think it wasn’t fair that I got stuck with this counting thing of mine, but I couldn’t care less about that now. Orenda deserves nothing but happiness. She should be able to grow up and become a teenager, a woman, a mother someday, then a grandmother, then a great-grand … argghh. I’m so mad. The world is so lucky to have her in it, and what does it do with this luck? It hands her ALS.
I get up and grab one of my markers. It’s blue. I walk over to my wall and write in huge letters ALS, so I have a constant reminder of who my enemy is. I want to stare at it, and I want it to stare back at me. I want it to know I am going to fight it. This is war.
My eyes trace each letter. Hate boils within me. A hate I didn’t know I had in me … But then I turn my head and look at the portrait of Orenda, and the hate instantly dies. I know that Orenda wouldn’t want me filled with hate. She wouldn’t want me to be obsessing about what it does and what I should expect to see. To her, she doesn’t have some life-threatening disease diagnosed by some doctor who is telling her she’s going to die. No. Orenda doesn’t live that way. She believes, with all her heart, that she is changing into a butterfly, just like her mother did. And when she is a butterfly, she will be free.
So, in front of the large blue ALS letters, I write four more letters—ANIM—and step back and smile. There. That’s much better. Orenda would like this.
Now all I gotta do is draw them. I will stay up all night filling my room with sketches of as many of them as I can fit onto these walls. I put marker to white wall and begin drawing. My first sketch will be of a rooster … And I won’t stop drawing until the rooster crows. Before morning, my wall will be covered in A-N-I-M-A-L-S.
CHAPTER TWENTY-EIGHT
THE INVISIBLE MAN (33)
A week has gone by since I last saw Orenda. My mom has been in contact with Foxy and assures me that she’s okay. They are doing tests at some fancy hospital up in Canada. I want to call her all the time, but
my mom said she is having trouble talking on the phone right now. I can’t imagine Orenda’s voice disappearing. Everything inside me wants to hop on a train and go see her myself, but I promised Ronnie and my mom that I wouldn’t miss any more school.
The last seven days have been pretty much the same. I go to school, avoid as many interactions with people as possible, although, since everyone now knows Aji was my brother, no one messes with me anymore. In fact, most people are pretty nice to me now, and Josh, well, he even passed the ball to me when we were playing basketball in PE. But I am too busy right now for friends. I am way too preoccupied with worrying about Orenda.
After school I come home, work out, and read. Every morning and every night, I peek outside to see if Orenda is home yet. But she’s not. I’ve been slicing up peaches and tossing them out into her yard for her, though. She’ll be pleased to know her butterflies are well fed.
And it’s not only Orenda’s absence that is driving me crazy … My grandma still hasn’t come home with Seven. But again, my mom assures me that everything is all right. Apparently, my grandma took Seven on an adventure that led them on a weeklong journey to Canada.
The way Ronnie tells it is that a few elders from the reservation went to comfort Orenda and her dad, and my grandma hitched a ride with them. And since Seven was with her at the time, they took her along, too. Yep. My dog went to visit Orenda, and I didn’t.
If there’s anything positive I can take from this week of isolation, it is that I have successfully transformed my white-walled room into a room completely full of animals. From floor to ceiling. It’s like I sleep in a National Geographic special. Also, I am basically now an expert in ALS … I’ve read all there is to read about it. It’s a terrifying disease, and knowing Orenda has it makes me incredibly stressed. And when I’m stressed out, I release it by hitting the bags. I am pretty much a fantastic boxer now. Ronnie took over in training me while Orenda’s away. He boxed in college. I feel sorry for whoever stepped into the ring with him. He hits harder than a truck. The bag goes flying.