Hunting Huntington's

I hated looking at her. No, I hated even thinking of her. She knocked down the salt shaker all the time, and every time I watched, every time I saw, every time I thought of it, she knocked down my life and my security. She knocked down my happiness and my hope.

“You can’t blame her,” they said. “She can’t help it. It’s out of her control.”

I blamed; I hated every aspect of her being. She forgot how to microwave a popcorn, and could barely eat it right anyways. She’d end up choking. I never wanted to learn how to do the Heimlich. It wasn’t a child’s job to have to learn it; it wasn’t my job to take care of her!

She’s my mom. Not the other way around!

“Please come here, my darling,” she cooed.

“No!” I shouted. She shuddered, violent tears shattered her glass like face, and in an effort to wipe them away, her wrist only collided with her forehead, then her hair. “No!”

“Stop it!” My father scolded me and rushed over to her. My 8-year old body plopped onto the floor and began to wail uncontrollably.

This was her fault. This was her fault.

The chants assaulted my mind. Why couldn’t I have ever been born? To see her! To see my future! No one can tell me my future! But she is. She does it every day!

“No!” I screamed.

“Stop it!”

“Please, it’s still me. I’m still your mother. I love you. Don’t you still love me?”

“N-no…” I admitted. And it was the truth.

- - - -

Huntington’s disease. That’s what my mother had. There was a 50% chance that she would pass it on. Thing is, she has two children. I was one; my younger brother was the other.

All we could do was pray: pray that we wouldn’t get it.

“Do you think I want this?” She shrieked. She was having another outburst again. I was 12 now; I had learned to be more patient with her; I had been forced to ‘mature’ and ‘grow-up’. But as the disease progressed, she got worse and worse, and it became more difficult to deal with.

I shook my head solemnly. She reached up and pulled some hair out of her head, crying out. I shielded my brother from her at these times. He was 9.

“Andy, go, go!” I ushered him up the stairs and mom jerked in a way that her hip hit the corner of a table in the hallway. She collapsed on the floor, trying to hold her knees to her chest, yet her body thought differently. Her hands grabbed at her feet and let go spastically, and she rolled her head. Though, as rapid as it sounds, she almost moved in slow motion. I tried to wrap my arms around her, hoping I could calm the storm that ravaged her body.

It was difficult because her body just bent all the other ways, but I could tell she was trying to nuzzle into me. Or maybe it was her head just rolling again. I shed a tear, though only one, felt like a tsunami along my skin.

I did my research.

Aggressive outbursts. Involuntary movements. Difficulty with coping and concentrating.

When you asked her a question, and she didn’t answer, you’d have to watch her head. But even then it bobbed along to its own beat, contrary to my mother’s wishes.

I hated every aspect of her being. However, words cannot describe how I have come from my selfishness to love my mother. And I loved my baby brother, who watched from the stairs, his head hidden between the bars, looking like a jaguar hidden in the ferns of a jungle. But he wasn’t stalking his prey. He was watching dreadfully.

We were our own time bombs, our own dynamite and kryptonite.

Every move I make sets in paranoia. Every time I trip. Every time I feel sad. Every time I knock over the salt shaker.

It’s like I’m trying to show my baby brother that I won’t let it be him. I don’t want it to be me. But I love my baby brother and I love my mother (and of course my father) and I’d give my life for them.

Yet on the inside, I don’t want it to be me.

I want it to be him.

- - - -

“Stop that! Eat it right,” I scoffed at her. She kept pouring her soup on the table and I had to wipe it up.

Today, I missed my first day of 8th grade caring for my mother at home. Stressful didn’t even begin to describe my situation. My father couldn’t miss another day of work without getting fired, so instead of sending her to a home with care workers, I offered to stay with her. My mistake.

She gurgled and made incoherent noises, occasionally whining when she spit her soup back up. I sighed.

“You’re not an idiot. I gave you medication this morning, now you can do it,” I attempted to be encouraging but I was sure it didn’t come out encouraging. It was so… difficult! She never listened; she was, in fact, an idiot!

She dropped her spoon and I slammed my hands down on the table. “FINE! Be your ridiculous vegetable self! I can’t miss school for you anymore! It’s not worth it!” I snatched my backpack up and trudged towards the door.

“N-n-no,” a faint wail escaped her. I froze with my hand on the cold, half-turned door knob.

It’s not fair. It’s not fair. This was her fault. This was her fault.

I kept my eyes closed for a while and tried to pretend I didn’t exist. I wasn’t supposed to be here. I don’t want to be here. I’m not supposed to get Huntington’s.

Huntington’s…

By the time my eyelids slid open and I released the door knob, turning around, she was standing with her walker in the door way to the kitchen.

It may not have been her fault, but it still wasn’t fair. It wasn’t fair for anyone. It wasn’t anyone’s fault.

“I’m sorry,” I whispered, leading her back to the kitchen with one arm around her shoulder and the other on her walker. I fed her instead of forcing her to feed herself. For a while, I cried and a lazy smile hung slanted on her face.

I don’t want it to be me.

- - - -

“You can’t do this!” I bawled and yanked on my father’s sleeve. “She’s your wife! She’s our mom! You can’t take her away-ay...” Afterwards, no one could even process the words I was chanting to myself, I mumbled them so badly.

‘Sorry.’ ‘Please.’ ‘Don’t.’ ‘No.’ ‘Why?’ ‘Stop.’

Andy, again looking like a jaguar filled with dread, watched from his window. The round child face of 11 shed tears like a flood. There went all the water in his body.

I hiccupped and clawed at the suitcase, at my father’s sleeve, and his hard face. How could he be so emotionless?

My mother sat in the back seat, probably suffocating with the seatbelt on her.

‘Sorry.’ ‘Please.’ ‘Don’t.’ ‘No.’ ‘Why?’ ‘Stop.’

They couldn’t take her right after we became best friends.

“Stop it!”

“No!”

Slap! Right across the cheek. I staggered back within earshot of the door creaking open, and Andy, with his skimpy legs, sprinted down towards me calling, “Please!”

Our family was falling apart over what we couldn’t control. We were fighting to survive, fighting for a reason. We were fighting to know that our destinies weren’t picked out and displayed like a circus in front of us. But the worst part was that we were fighting each other.

“It’s not fair!” I screamed and beat the ground under me like a child. I’m 14. I’m supposed to be a teenager.

“Why is it that I always have to tell you to grow up?” My father roared like a grizzly bear. By this time, my brother had run into my shoulder, nearly toppling over me and crying with dirt on his face, latching onto me like his life depended on it. Because it did. We depended on each other. Our mother was going to spend the rest of her life in a home where people–people she wasn’t even related to–were going to take care of her. That was my job! It was my father’s job! But he wasn’t the same.

My father had changed from such a compassionate person to a hard shell of an embarrassed man. And embarrassed of what? His wife. His children!

“I HATE YOU!” I shrieked as if someone was trying to kill me, which they were. I didn’t care the neighbors were out in their lawns now, staring at us, watching, gossiping. I didn’t care and I never will. Still, I wanted to run. To run away from this life, this destiny. I didn’t want it to be me. I wanted it to be my brother, Andy. I wanted his spouse and children to watch him decay, not mine!

I jumped to my feet and sprinted towards the porch, hoping it was as simple as running up the steps and up the stairs and to my room where I could hide. But it wasn’t that simple.

No, instead, I tripped. On the porch steps. Slam! My face, my nose collided with the wood. Ccrraccrk! My hip smashed against the edge of the steps. I gasped, rolled over on my back, and slid my fingers over my face. Now I had tears and dirt and small ripped blades of grass covering my face.

I couldn’t hide. I couldn’t run. It was me. They’d watch me decay and wither. Like we watched our mom.

She was sitting in a daze now, not knowing what was going on, and quite frankly not caring either.

Lucky.

- - - -

“Come on, I know you want to go. And plus, don’t you want to support your best friend? She’s counting on you! If you don’t, she’ll… she’ll rip up all her paintings!” Andy laughed, but I just held my knees tighter against my chest at my window, thinking about my mom.

“No thanks,” I muttered and whipped out a cigarette and lighting it.

“Well, I can’t go without you, since I can’t drive and you can. So,” he mumbled and plopped on my bed, “I guess I’ll just sit here and annoy you.” I finally glanced his way and he beamed a grin at me. I raised a brow and caused smoke to curl in front of our faces.

I turned back to the window. “I guess so.” I could feel the disappointment that emitted from my younger brother. It just filled the air. Like smoke. I wondered if he could feel my pain and anger. It pissed me off that he acted like mom’s death didn’t bother him at all. Of course not. He never performed the Heimlich on her when she was choking. I did. I did it right every time. So why could the caretakers help her?

He didn’t have Huntington’s Disease. I did. Andy wasn’t 17 and he didn’t think about dying 24/7. I did.

I heard some shifting and paper crumbling coming from my brother. I could tell he stood by the way the mattress let out a long creak that said, ‘Look’. So I peeked over my shoulder at Andy.

“One of us is gonna die. One of us is gonna fidget, shake, forget, and cry. One of us is gonna die. And I’m not sure who and I’m not sure how. But I’m sure I don’t want it to be me, and I don’t want it to be you,” Andy read from his unfolded paper in front of me.

“Going. One of us is going to die,” I corrected him.

“Oh yeah, thanks for your concern, sis,” he laughed. I put out my cigarette and held my arms wide open and he crashed into me, still laughing. I wasn’t entertained so easily. I was exposed to all the toxins. I couldn’t breathe. There was nothing to laugh about.

So I cried. Eyeliner streaked my cheeks like dirt and tears. Andy frowned; soon, he was sobbing and wailing like a siren. I was glad dad wasn’t home. He would’ve told Andy the same old thing: ‘Andrew, you are a fourteen year old young man! Not a fourteen year old young woman!’ That was my dad, the misogynist.

After we settled down, I laid my hand upon Andy’s head. “We’re both going to die, unless doctors invent immortality after one of us dies first. It’s okay. It’s not going to be you Andy. It’s going to be me.”

“N-n-no,” he faintly wailed. I froze. “Don’t say that. I don’t want you to stay cooped up in here forever because that’s what you honestly believe. You have to start living. Please! Please, please, please, for me, start living. You’re all I have left.”

I heard everything he said, but none of it registered.

It’s not fair. It’s not fair. Andy deserves this. Not me.

No. He doesn’t.

He doesn’t deserve it. But neither do I. Where was my justice?

“Okay,” I whispered.

“Let’s go see that art show,” his warmth filled me.

“Yeah.”

I missed our mom. Her death two years ago was her knocking down the salt shaker again. She knocked down my hope and my security.

- - - -

“Wait, why did they fire you?” I asked Andy.

“I was putting the groceries on the shelf and I accidently tipped some stuff over. So they fired me!” He replied defensively.

“Yeah, but why?” I asked again, slightly annoyed by his angry response.

“I don’t know!” He screamed, his face almost bloody red. As he stomped past me, he stuck his hand out and swiped a vase off of the table and onto the ground, causing it to shatter. The noise was followed by a slam of his door. Well, he doesn’t need to have an attitude about it.

As I bent down to pick up the pieces, my father walked in the room. “What happened?” He asked, bending down to help me. Things have gotten a lot better around here, with our relationship with dad since we started having family counseling. He’s more simple and regular, not hard or compassionate. Just him. And it’s good enough for his girlfriend, and she’s good enough for him, which is good enough for me.

“Andy got a little frustrated because he got fired,” I sighed.

“Why did he get fired?”

I shrugged. “Something about him tipping a box over.”

“Well that’s ridiculous. Half on the store, the other half on him. It’s not a big deal; we don’t have any real troubles with money around here. If he’s trying to be independent, he can, but as long as he’s my son, which he always will be, he shouldn’t worry,” Dad grunted and threw away the pieces of glass.

“Oh, so Andy is welcome here but I need to get off my lazy butt and get out?” I questioned, giggling.

“No! I’m just saying, Andy is 17, almost 18; you’re 21. It just wouldn’t kill you to figure out your own plan. But I know you’re doing community college which is perfect. I’m proud of you sweetie. You know that right?”

I crossed my arms and stared at him for a few moments. “Oh, don’t start getting mushy on me. Is Cheryl coming over for dinner tonight? I was gonna make spaghetti, so I need to know if I need to make extra,” I replied, referring to his girlfriend.

“Yes, she is. I appreciate that–” He glanced at his watch. “–and I have to go now, love you, bye!”

With my dad out of the house, I went to Andy to check up on him. “Hey Andy– wha? Andy?”

My baby brother was sitting with his head buried the bottomless pits of his hands, sobbing. Shuddering and uncontrollable sobbing. His tears came like rivers, lakes, oceans. I had never seen him like this.

“Andy, what’s wrong?” I inquired, wrapping my arms around my poor baby brother, tortured by nothing I could see. Did it have to do with mom?

“I’m so pissed off!” He yelled, ripping away from me, yanking his alarm clock out of the wall and throwing it down hard on the ground. He clenched his head, still sobbing.

“Andy! That wasn’t necessary, but it proves you have to talk to me. What is wrong?” I begged for an answer.

“I’m… I’m worried. I’m scared. No. Terrified,” he confessed, wrapping his arms around his body.

“There’s no need, Andy. But remember? The day after your birthday, we’re gonna go get tested for Huntington’s. And do you know what the results are going to be?”

“N-no,” he whimpered.

“And neither do I. But we’re going to walk out of there and we’re going to be smiling, because it doesn’t change us. I’m still your older sister. You’re still my younger brother. And all we have to do is hope that we both have negatives. You know? Because if you worry about something and expect it to happen, it’s gonna happen.”

Did I want it? No. Did I want my brother to have it? No.

But despite all we’ve been through and how much I love him, I’m too selfish to say I’d take this bullet for him if I could.

I couldn’t help it. Not after my mother.

-

Dinner was going great with Cheryl and Dad, but Andy still seemed a bit agitated. His foot was tapping and he kept playing with his food instead of eating it.

“Well, Cheryl and I have an announcement to make,” my father started after we were half way through dinner. Oh no. Here it comes.

“We’re engaged!” Cheryl cheered. I pretended to be surprised and ‘dropped’ my spoon with an amazed look on my face. Some things you just can’t help but see a couple inches from your face.

“Yay! This is great!” I said, running over to Cheryl, examining the ring my father had given her and hugged her and dad. Andy stayed in his seat, staring. And staring. And staring.

And then, he snapped.

“No!” He shouted thunderously and slammed his hands down on the table. He pointed a long finger at Cheryl, his face that tomato red again. “You’re not our mother! You can’t take her place!”

“Andy! Stop it!” I scowled rushing around the table and grabbing his wrist.

“How could you turn on mom like this? How? You’re a liar!” He screamed at me, partially spitting on me. I winced at both the insult and the spit.

“I didn’t turn on mom! Andy, what about dad? And Cheryl? They deserve this they’re happy!

“No!” He protested.

“Stop it! Stop acting like a child!” I demanded.

“Please, don’t,” Cheryl cried.

“You two better settle down,” Dad attempted guiding us, but I could tell he was conflicted.

“No! Just shut up! You aren’t even part of us either dad! You don’t share our suffering!” My brother scoffed at him. So I slapped him across the cheek.

“Andy!”

What did Andy do? Well he did what any insensible guy would do. He pushed me. Hard.

I stumbled backwards against a corner table, my spine ricocheting off the wall while glass shattered around me. Andy…

I didn’t understand what went on after that. Dad pushed Andy and Andy pushed Dad? No. The police came? Right? No? Did mom come back?

Did she tell him… did she say…

- - - -

I grasped my brother’s hand tightly as we waited to be called into the doctor’s office. We sat in awkward, fearful silence.

It was a month ago that Andy lost his temper and pushed me. Cheryl has since called off the engagement, calling it ‘temporary’ until we settle everything. I could tell she wasn’t staying for more than a week from today. Tickets. Plane tickets. One way. One seat.

We were waiting for the results back. I told Andy before coming in here that nothing would change. But I sat there, asking, ‘What will happen? Something will change. So what is it?’

A sigh slipped from my lips and Andy almost jumped in fear. I elbowed him jokingly and he smiled, though it hastily switched to a frown.

“…and Andrew Cole?” I hadn’t heard my name but I assumed the doctor had called it too, and together, Andy and I stood up, walked in, and sat back down again without ever releasing each other’s hands.

“Huntington’s disease is a neurodegenerative disorder, as you two already probably know,” Dr. Yard began, and I knew someone or both of us had a negative, immediately. He was explaining before delivering the news. Andy’s foot was tapping on the floor again. The doctor had his fingers intertwined. I squeezed Andy’s hand. “The onset of HD is usually anywhere from 2 to 85 years of age. On average, it’s 37, which is a some older than when you’re mother’s Huntington’s onset started.”

He paused for what might as well have been an hour.

“You know the symptoms. Behavioral, motor, cognitive. The first symptoms, as you should know, vary from person to person, even within families.” My mom’s were ‘motor’ problems first. Chorea: involuntary movements. Then behavioral: she was often angry. Soon cognitive: she started to forget where she was, what she was doing.

The doctor leaned forward and handed us two envelopes. We took them in our hands and weren’t sure what to do. Open them now? Open them outside? At home?

Andy beat me to it. He ripped and slashed his open and scrambled with the paper, fiddling with it to read it. I gently started to open mine when Andy paused to look at me before seeing his results. I pulled it out and Andy counted to three.

“One.”

Oh god.

“Two.”

Nothing will be the same.

“Three!”

The sound of paper cackling filled my ears.

And relief erupted from the bottom of my soul. Negative.

I jumped up out of excitement, screaming and cheering with tears of happiness and thankfulness. After almost 20 years! I was free! Before, I was a slave and caged! And now: I’M FREE!

“Woohoo!” I cheered, running down the halls, grabbing nurses by shoulders and taunting, “I don’t have Huntington’s, ha-ha ha-ha HA!”

“Oh my god. Thank GOD. THANK HIM SO MUCH! I love you!” I yelled and fell on my knees, clasping my hands together and prayed for the first time ever, thanking for my LIFE back. It was perfect. I was happy. I was free.

- - - -

I was not free.

I sobbed. And cried. And bawled. I cried so hard, my insides burned, my head bounced, my throat was dry and I felt like a planet devoid of life.

Andy had it. Andy had Huntington’s. Andy was going to die.

And it was all my fault.

I wished he got it.

And he did.

- - - -

“Your son has Huntington’s, but you disown him! What kind of father are you?” I shrieked at my dad.

“It was no excuse! I was this close to being happy! I wasn’t happy before Cheryl! I wasn’t even happy with your mother! And you moping little whining children! I never got enough of ‘boohoo, I’m the child of a woman with HD!’” He shouted and slammed the door.

“You bastard! I hate you! I hate you! Don’t even think of coming back! You monster! I hate you!” I howled, beating on his door until my fists bled and his new neighbors threatened to call the cops. I sniveled and ran away from myfathers’ David’s apartment. I ran all the way back to Andy’s, and while he sat in bed, I held his hand.

I questioned telling him I had wished this upon him.

But I decided against it.

- - - -

I was 28 years old now. And Andy was 25. We were in the hospital, since lately he’s been having health complications.

“Where are your children?” He asked, his words slow and taking two minutes for him to remember what he had been saying.

“I don’t have any children, Andy,” I answered.

“Liar!” he pouted and crossed his arms, refusing to look at me until he forgot. His arm was bruised. I remember when he fell while I wasn’t looking and screamed, “I want to die! I want to die! Kill me now! Kill me!”

“Why are you crying?” He questioned, still at a snail’s pace. Surprised, I wiped my face and found tears on my fingers. I had no idea I had begun to cry.

“I’m just a little sad, Andy. Why don’t we color in a coloring book, hmm?” I replied, pulling a book out of my purse and a couple of crayons. When I handed them to Andy he touched them. “Do you have your grip?”

“Yes.”

So I let go. And the items dropped to the floor. I bent down to pick them up and place them on his hospital bed.

“Andy, do you want me to tell you a story?” I asked and he nodded rapidly, or so it seemed. “Okay, well, it starts with this little boy and his name is… Adam. And Adam was such a sweet boy. He loved his mother, his father, his sister and everyone around him. He liked art shows, and believed in living his life to the fullest.”

I hesitated. I was scared of the next part of the story, despite I had yet to come up with it. “And one day, Adam ate from the same vegetables that his mother ate.”

“Ewwwww, vegetables!” Though it came more like, “Eewrrrwwrr…vegestalls…”

“Yeah, ewww!” I laughed, and for the first time in a long time, too. “And so Adam got sick. But even still, while everyone around him disappeared, he still smiled. He went on a Ferris wheel and he went to the beach and built a sand castle!”

“Woah!” Andy cheered.

“Wooaah!” I mimicked. “Yeah, yeah, Adam, er, Andy. You see, Adam still has a long list of…–” Beep. “–of…” Beep. Beep. Beep. Beep. Beep. “Andy?” He started jerking differently. “Andy?” I turned to the hallway. “Help! Nurses? HELP!” I cried.

In minutes, nurses flooded the room with machines and IVs and more I didn’t understand. One gripped me by the shoulders and began to push me out of the room. “You need to leave! You need to leave now, we will take care of your brother.”

I didn’t hear her. “Andy? ANDY!”

“Please!”

“Please!”

“Please, it’s still me. I’m still your mother. I love you. Don’t you still love me?”

“N-no…” I admitted. And it was the truth.

She knocked down my life and my happiness.

It’s not fair. It’s not fair. This was her fault. This was her fault.

‘Sorry.’ ‘Please.’ ‘Don’t.’ ‘No.’ ‘Why?’ ‘Stop.’

“One of us is gonna die. One of us is gonna fidget, shake, forget, and cry. One of us is gonna die. And I’m not sure who and I’m not sure how. But I’m sure I don’t want it to be me, and I don’t want it to be you.”

“Stop acting like a child!”

But despite all we’ve been through and how much I love him, I’m too selfish to say I’d take this bullet for him if I could.

I want it to be him.

“You bastard! I hate you! I hate you! Don’t even think of coming back! You monster! I hate you!”

And it was all my fault.

I wished he got it.

And he did.

“I want to die! I want to die! Kill me now! Kill me!”

How selfish could I get?

“Dead at 6:43 P.M.”

“Miss Cole? Miss Cole?”

“A blood clot from a fall…”

“Angela? Angela Cole?”