Page 14 of We Own Tonight
Her seizure was the worst one yet. Thankfully, there hasn’t been any damage that has manifested, but I’ve refused to leave her side, not even for a second. I hate myself for being at that stupid concert instead of here with her. She’s my entireworld.
“Go to work, Heather. I can’t handle you being around me. You’re like a fucking helicopter, always hovering over me. You annoyme.”
One of the worst parts of Huntington’s is the mood swings. Stephanie was a sweet, kind, and happy-go-lucky kid. When she was nineteen, she had her first onset of tremors. Her body would go stiff and she couldn’t move. Immediately, Matt and I took her to the doctor, but they couldn’t findanything.
Then her mood did a complete one-eighty. It was as if someone stole my sister’s identity and replaced it with the angriest person I’d evermet.
“I am going to work today, thankyou.”
“Good. Do I go back to Breezy tonightthen?”
“Depends what the doctorsays.”
According to the neurologist, we can expect her to continue to deteriorate, and she’s at high risk of another seizure that could leave lasting effects. The younger you are when you become symptomatic with Huntington’s the faster things getworse.
“Yet again, I have no say in anything. It’s always you and the doctors. I’m a fucking adult!” She rolls her eyes and turns onto herside.
“I know you are, but yelling at me isn’t going tohelp.”
My patience with Stephanie is unending, but at times, I lose my cool. Being told how awful, worthless, and depressing I am eventually wears me down. I know it isn’t her. She acts this way because she’s frustrated and in pain, but I still hateit.
However, it was Stephanie who made the decision to move into Breezy Beaches. She knew I couldn’t quit my job to take care of her. I needed to make whatever I could, and a live-in nurse was way over our budget since insurance wouldn’t cover it. She needed around-the-clock care that I could no longerprovide.
It was the single most devastating day of my life. I cried harder after dropping her off than I did the night our parentsdied.
“I hate you. I hate this disease.” She flips back over and throws the cover back, staring up at the ceiling. “I hate itall.”
I touch her shoulder, and her hands start to move. They took her off the medication for the tremors when she was admitted, and it took less than forty-eight hours for them to comeback.
“Steph,” I say carefully. “Please don’t shut meout.”
“I c-ca-can’t.” Her eyes well with frustration and tears. “I h-hat-t-e th-this.”
I move to the side of the bed and lace her fingers with mine, trying not to cry as well. Our hands move together as her body takes control. I do my best to comfort her. “I know, love. I hate it, too. Right now, we’re just dancing. That’sall.”
In the beginning of the disease, this was what I used to say when her hands and feet would go. It was our dance break. I muster a smile and start singing as we move with no rhythm orpurpose.
My heart breaks as I watch this disease rob my sister of a life she deserves. It isn’t fair that she got the gene and I didn’t. I would gladly take it for her if I could. So many times I’ve watched her and tried to stay strong, but sometimes there is no strength. Sometimes I can’t help myself from losing it. My lack of strength sometimes won’t be my demise—love will be. Love is what breaks me down. Love is what makes it so hard to forgive God for doing this to us. Stephanie should be hanging out with her friends, working,livinglife. Instead, she’s stuck in a facility because we have no idea when the next symptom willarise.
The tear I was fighting so hard to push back,falls.
Stephanie’s eyes lock on mine, and we both crytogether.
“Is your sister better?”Matt asks as we finish rollcall.
“Yeah.” I nod. “She should be going back . . .” I stop myself from saying the word “home” because it isn’t home. It’s a fucking group home, and I hate that she’s there. “to the place soon. Thanks for covering forme.”
“I know this is hard for you,” he says, trying to comfort me. “I hate seeing you likethis.”
Right. I’m so sure that’s thecase.
“Wouldn’t have been if I had my husband’s support.” I toss back athim.
I watch his face shift to hurt. “Heather,” Matt whispers. “It wasn’t likethat.”
I roll my eyes and huff. While Stephanie takes her hurt out on me, I channel my anger toward Matt. “It was exactly like that. You left me. You moved out because I wasn’t willing to put my sister in that home. You made it so that I had no other choice in the end. We were supposed to be a team, but you . . .” I pause and try to get myself back under control. “Youleft.”
“You didn’t give me any choice!” Matt’s voice rises. “I was watching my wife drift away. I couldn’t do anything. I couldn’t make you happy. You act like I’m the villain here, but I had to sit around watching you loseyourself.”
