Every Breath

“What’s wrong?” he asked.

“I’m sorry,” she said. “I’m so, so sorry. I wish I had never left you. I wish I had found you earlier, I wish you had gotten on that plane…”

There was something in her voice, a fear he hadn’t expected. “I’m here now,” he said, “and I’m not going anywhere.”

“It’s too late,” she said, her voice cracking. “I’m sorry, but it’s too late now. I can’t do this to you.”

“It’s all right,” he whispered, feeling the first inkling of panic. He didn’t know what was wrong; he didn’t know what he’d done to upset her. “I understand why you had to leave. And you have two wonderful children…Hope, it’s all right. I understand the choice you made.”

“It’s not that.” She shook her head, a deep weariness weighting her words. “But it’s still too late.”

“What are you talking about?” he cried, gripping her arms and pulling back. “I don’t understand what you’re trying to tell me. Please talk to me, Hope.” Desperate, he tried to peer into her face.

“I’m afraid…and I have no idea what to say to my kids…”

“There’s nothing to be afraid of. I’m sure they’ll understand.”

“But they won’t,” she said. “I remember how hard it was for me.”

Tru felt a shiver go through him. He forced himself to take a deep breath. “I don’t understand.”

Hope began to cry harder, great gasping sobs that left her clinging to him for support. “I’m dying,” she finally said. “I have ALS like my father did, and now I’m dying.”

With her words, Tru’s mind emptied, and all he could think about were the shadows cast by the fire and the way they seemed almost alive. Her words seemed to ricochet inside him…I have ALS like my father did, and now I’m dying.

He closed his eyes, trying to offer strength, but his body seemed to be weakening. She squeezed him hard, whispering, “Oh, Tru…I’m so sorry…It’s all my fault…”

He felt a pressure behind his eyes as he heard her voice again.

I’m dying… She’d told him how heartbreaking her father’s decline had been; that he had lost so much weight in the last few months that Hope could carry him to the bed. It was a ruthless and unstoppable illness, finally stealing even his very breath. Tru didn’t know what to say as Hope rocked and sobbed against him, and it was all he could do to simply remain upright.

Beyond the windows, the world was black. A cold night, but Tru felt even colder. He had waited a lifetime for Hope and had found her, but all too soon, she would be stolen from him again. His thoughts were racing and he ached inside, and he remembered again the last line in the note he’d written to her after she’d invited him to Kindred Spirit the very first time.

I’m anticipating surprise with you as my guide.

He didn’t know why those words leaped to mind, or what they were supposed to mean right now, nor did they seem to make any sense at all. Hope was his dream, all he’d ever wanted, and she’d told him that she was dying. Tru felt on the verge of shattering as they clung to each other and wept, the sounds muffled in the cocoon of the silent house.

DAY BY DAY

I knew I had it, even before my first diagnostic test,” Hope said.

It had taken her a while to stop crying, and when her tears had finally abated, Tru had wiped his own face as well. He’d gone to the kitchen to make more tea and brought a fresh cup to her as she sat on the couch. Her knees were drawn up, swaddled in the blanket.

Gripping the mug with both hands, she said, “I remembered what my father had told me it was like in the very beginning. Just this overall run-down feeling, like a cold, except that it never got any better. I was the one who suggested the diagnosis to my doctor, but she was skeptical. Because ALS generally doesn’t run in families. Only one in ten cases has any kind of family history. But when I went in for the tests and the results were slow to come back, I knew.”

“When did you find out?”

“The July before last. So a little less than a year and a half ago. I’d only been retired six months and was looking forward to a new life.” Then, knowing what his next question would be, she added, “My dad lasted a little less than seven years. And I think I’m doing better than he was, for now, anyway. By that, I mean I think it’s progressing more slowly than his did, but I can tell that it’s worse now than when I first found out. I struggled to make it to Kindred Spirit this morning.”

“I can’t imagine what it’s like to face this, Hope.”

“It’s awful,” she admitted. “And I haven’t figured out a way to tell the kids yet. They were so young when my dad passed away that they don’t really remember him. Nor do they remember the toll it took on the family. I know that when I finally do tell them, they’re going to react in the same way I did. They’re going to be terrified and spend a lot of time hovering over me, but I don’t want them to put their lives on hold for me. I was thirty-six when I found out, but they’re just starting out. I don’t want that—I want them to live their own lives. But once they know, that will become impossible. The only reason I didn’t fall apart when my dad was sick was because the kids were young and needed all my attention. I didn’t have a choice. But I told you what it was like with my dad…how hard it was to watch him die.”

“You did.” Tru nodded.

“That was one of the reasons I put the letter in the mailbox last year. Because I realized that…”

When she trailed off, Tru reached for her hand. “You realized…?”

“Because I realized that while it was too late for us, maybe it wasn’t too late to apologize to you, and I needed to do that. Because I saw you standing in the road and I just kept going. I’ve had to live with that, which might be punishment enough, but…part of me wanted your forgiveness, too.”

“You’ve always had it,” he said, wrapping his other hand around hers, cradling it like a broken bird. “I wrote it in my letter—meeting you was something I would have done a thousand times over, if given the chance, even if I knew it had to end. I’ve never been angry at you because of the choice you made.”

“But I hurt you.”

He leaned closer and raised a hand to touch her cheek.

“Grief is always the price we pay for love,” he said. “I learned that with my mum and when Andrew moved away. It’s the nature of things.”

Hope was silent as she contemplated this. She stared up at him. “You know what the worst part is?” she said in a subdued voice. “About knowing that you’re dying?”

“I have no idea.”

“Your dreams start dying, too. When I received the diagnosis, one of the first things that went through my mind was that it meant I’d probably never be a grandmother. Rocking a baby to sleep, or doing paint-by-numbers at the picnic table, or giving them baths. Little things, things that haven’t even happened and might not ever happen, seemed to be what I missed the most. Which I’ll admit makes no sense, but I can’t help it.”

Tru was quiet as he reflected on what she’d said. “When I was in the hospital,” he finally responded, “I felt the same way. I dreamed about going hiking in Europe or taking up painting, and then I’d get massively depressed when I realized that I might not be able to do those things. But the batty thing is that once I got better, hiking and painting no longer interested me. I think it’s human nature to want what we might not be able to have.”

“I know you’re right, but still…I was really looking forward to being a grandmother.” She managed a small laugh. “Assuming that Jacob and Rachel get married, of course. Which I doubt will happen anytime soon. They seem to enjoy their independence.”

He smiled. “I know you said the walk this morning was tough, but you seemed all right on the way back.”

“I felt good,” she agreed. “Sometimes it’s like that. And physically, I feel all right most of the time, as long as I don’t overdo it. I don’t think there’s been much change lately. I want to believe that I’ve come to terms with it. It’s enlightening, because it makes it easier to decide what’s important to me and what isn’t. I know how I want to spend my time, and what I’d rather avoid. But there are still days when I get frightened or sad. Especially for my kids.”