His breathing was ragged. He looked like he was going to be sick. I felt like I was going to be sick too.
I sat next to him. “Look, let’s just calm down. Okay?” I rubbed his back. “We can talk about this when you’re calmer.”
“No. We talk about it now.” He was so out of breath it took him a minute to say the next thing. “If you don’t have a diagnosis, how can they get you on the right medications?”
I felt my heart shattering.
He knew nothing. None of it. None of the things that I thought he did.
How had this happened? How did something so big slip through the cracks?
“Adrian,” I said gently. “I won’t be taking any medications.”
He froze to stare at me. “What?” he breathed. “What do you mean?”
“I’m not seeking treatment.”
“What do you—you need medications, there’s clinical trials—”
“So I can spend the rest of my short life getting spinal taps and dealing with side effects worse than the disease? In exchange for maybe a couple of extra months of life expectancy? And that’s if they don’t give me a placebo. And treatments?” I scoffed. “Do you know how few medications there are to treat what I might have? Do you know what they do? They give me three months, Adrian. That’s it. Three extra months. Melanie took them. She had headaches and vomiting and was so dizzy and tired she could barely keep her eyes open. She was hooked up to an IV every single day, they had to constantly monitor her blood and her liver function. I don’t want to live like that. I’ll be tied to whatever hospital is treating me, I won’t be able to travel—”
The look on his face could only be described as horror.
“But…what if there’s a breakthrough?” he said. “What if it’s happening right now? What if they find a cure and you’re not in the trial? Vanessa, you have to get treatment—”
I shook my head. “No. I won’t. I’ll do physical and speech therapy virtually so I can travel. And when I need help breathing and eating and moving, I’ll take those steps. I’ll do what I need to do to stay comfortable and independent for as long as possible. But I won’t take the medications and I won’t enter a trial. If I have this, it’s already too late. My family’s strain progresses too fast. Not any of the promising research they’re doing in those trials reverses the damage of the disease. It only slows the deterioration. By the time I got a diagnosis and got in a trial, there wouldn’t be any fixing what it had already done to me—and then what? I get to be a guinea pig? That’s it? That’s the rest of my time here?”
He didn’t reply. He just looked at me, breathing heavily through his nose.
I licked my lips. “Adrian, I want to live my best life. I want to travel and have adventures and drink all the wine while I’m still able and laugh and have fun for as long as I possibly can. I don’t want to give this disease one more minute. And neither should you.”
He got up and my hand fell away from his shoulder. He started to pace. “No.” He shook his head. “No, you can’t. You have to hang on for as long as possible. You don’t know what might happen. You don’t know what developments they might come up with—”
I let out a long breath. “There’s no clinical trial I haven’t read about or study I haven’t followed. There’s not going to be a miracle. At least not in time for me. If I have this, I’m dying. And all I’m asking is for you to understand how I want to continue to live. Believe me. This isn’t some spur-of-the-moment decision. I know what I want. And I won’t change my mind.”
He shook his head at me, tears in his eyes. “No. I won’t let you do it.”
I blinked at him. “Won’t let me do what?”
“I won’t let you give up.”
“I’m not giving up. I’m just choosing to live and die on my own terms.”
He closed the space between us and put his hands on my arms. “We’re a couple. We decide things together, Vanessa. You have to fight this. Let me help you fight it. We’ll find the best doctors in the world, we’ll go anywhere. I’ll fly—” He choked on the last word and my heart broke all over again.
“You can’t fix this,” I whispered. “I know it’s hard for you not to be able to control this. But Adrian, please. I need your support.”
His anguished eyes searched mine. Then he dropped his palms from my arms. He turned away and dragged a hand through his hair.
“No. I won’t support it.” He shook his head and looked back at me. “I won’t let you abandon hope. What if there’s a breakthrough? What if you could live another twenty years?”
“And what if I can’t?” I snapped. “What if I only have one more year before I can’t swallow or breathe without equipment? One more year before I’m dead. I want to keep living my life, Adrian. I’m not wasting precious time hooked up to IVs, trapped in hospitals chasing rainbows.”
We stood there staring at each other, breathing hard.
“I’m doing this with or without you,” I said, tears welling in my eyes. “Please don’t make me do it without.”
We stood there in a standoff of silence. I saw his heart breaking. It cracked and tore across his face. A strong deep-rooted tree, struck by lightning, split right down the middle. He looked instantly worn. I’d never seen him look this tired. Like some sort of vitality had left his body since I saw him last.
“I just want none of this to be happening,” he whispered.
I swiped a tear off my cheek. “Okay. Then let’s forget it’s happening. Let’s go do something fun. Let’s rent snowmobiles or go tubing. Let’s stay up late trying some acrobatic sex move in the bathroom. Get an injury we don’t want to explain to the paramedics.”
This garnered me a tiny smile—but it didn’t last. “I need to have a say in this, Vanessa.”
I blinked at him. “A say in my life?”
“It isn’t just your life. This doesn’t just affect you.”
I set my jaw.
His eyes begged me. “Please. People fight this. They try everything possible—”
I nodded. “Yes. Many choose to try everything. That’s their choice. That was Melanie’s choice. This is mine. And the only person who should be making it is me.”
He stared at me bleakly from across the room. Then he sat on the damask chair and put his face into his hands, squeezing his fingers into his scalp.
“I won’t be a captive to this illness, Adrian. I won’t spend my life catering to its what-ifs. It’s already taken enough from me.”
He didn’t look up.
I couldn’t be sure, but I thought he might be crying.
I wanted to tell him that everything would be okay, like he’d told me once. But I couldn’t. I didn’t want to give him false hope.
Then I realized that day in his office when he said that to me, he hadn’t meant it. How could he? He didn’t have any idea what he was talking about.
It wasn’t until just now that he realized how hopeless it all really was.