Pebbles, their goofy Australian shepherd mutt, had been staying with Jen since Lauren’s hospitalization; Josh had forgotten to ask for her back. Well. Another day wouldn’t matter.
Josh went into the bedroom. Lauren’s medical stuff—her at-home oxygen, her percussion vest—was gone. Josh had agreed to that, he remembered vaguely. Donate the stuff to someone in need or something. The pill bottles that had sat on her night table, the Vicks VapoRub . . . those were gone, too.
Idiopathic pulmonary fibrosis. Twelve syllables of doom. A disease for which there was no cure. A disease that usually hit older people but, occasionally, chose a young person to invade. A disease that had a life expectancy of three to five years.
Lauren had gotten the shorter end of that.
Their bed was made perfectly, same as Lauren used to make it, before the small task took too much out of her. He always tried to make it as precisely as she did and never quite managed, something that made her smile. The cute, useless little flowered pillows were in place.
It was as if she’d just been here.
Josh grabbed some jeans and an MIT sweatshirt and changed into them. In the kitchen, he pulled the tulips out of their vase and threw them in the trash, then dumped the water and tossed the vase in the recycling bin. He gathered up his suit, shirt, socks, even his boxers, and carried them up to the rooftop garden that had come with this apartment. For once, he didn’t think about how much he hated heights. The bite of cold, damp air was welcome.
A seagull sat on one of the posts of the iron railing that encircled the garden, watching him, its feathers ruffling in the breeze.
He turned on the gas grill, all burners, as high as they’d go.
Then he burned the clothes he’d worn to his wife’s funeral, and stood there long after they were ash and the snow began to fall.
4
Lauren
Three months left
November 20
Dear Dad,
How’s it going in the Great Beyond? Please tell me you can fly. I’m going to be very disappointed if I can’t fly. Also, I’d like to be able to save people. You know those reports where someone says, “I don’t know how that truck missed me! I thought I was a goner!”? I’m hoping that’s what we get to do, because how cool would that be?
We’re back from the Cape, more or less. It gets really quiet up there in the off-season, and I was getting a little melancholy and cold. Walking on the beach isn’t as fun if the wind knocks you backward, you know? I mean, it’s thrilling, but it’s exhausting, too.
Sebastian turned four, Dad! Josh and I gave him the biggest Tonka truck we could find, one that made lots of beeping and grinding noises, and he LOVED it. Octavia is six months old and has two tiny teeth, sharper than razor blades, but so cute. The drool that spills out of that kid’s mouth should be gathered to end drought in small countries. Honestly. I had no idea a human could produce that much drool.
Mom’s doing fine. You know. She’s wicked sad and doesn’t understand the philosophy of “keep on the sunny side.” Still, you’ll be happy to know I have dinner with her every Tuesday night, just the two of us, because . . . well, because Mom is going to need these times to look back on.
After this summer on the Cape, I took a turn for the worse. It’s not awful, but . . . well, the IPF is really undeniable now. I’m on oxygen almost all the time, and I shamelessly nap at work almost every afternoon in the office Bruce set up for me. I work from home a lot, too. To my own credit, I’m not slacking off. I’m leaving my mark, Dad, just like you told me to. But a cold laid me low for two weeks, and I was in the hospital for five days with another lung collapse and mild pneumonia. At least I didn’t need intubation this time. Listen. You and Mom shouldn’t have skimped on my lungs. You should’ve sprung for the Usain Bolt model. These are bargain-basement lungs.
When I was in the hospital, Dr. Bennett mentioned a lung transplant, and I thought Josh might have a heart attack. He had to leave the room and couldn’t talk for about an hour once he came back . . . he shuts down when the news isn’t great.
The thing is, Dad, once you get a lung transplant, another clock starts ticking. A lung transplant is like . . . well, it’s like the three hundred Spartans holding off the Greeks. They’re glorious and brave, and you really believe they’re gonna win, until they don’t. For some reason, lungs don’t take as well as other organs. It’s not exactly a cure. The Mayo Clinic, whose website is my go-to medical source online, said, “Although some people have lived ten years or more after a lung transplant, only about half the people who undergo the procedure are still alive after five years.”
So. I have a 50 percent chance of living five years if I get new lungs. Not great. Scary to think that could be my best option.
These days, I can feel the difference. Josh understands the numbers—spirometry flow, lung volume, pulse oximetry, lung diffusion. He can see when I’m tired, and he takes such good care of me, but I can’t say, “How was that phone call to Singapore, hon? By the way, I can’t breathe as well today.” I know why Josh is obsessed with finding a cure—it seems like there’s something that could fix this. I picture the “fibrotic material,” as Dr. Bennett calls it, as a tangle of feathery yarn. Pink yarn. Pepto-Bismol pink. Where’s the tiny excavator that can get in there and shovel them out and give me my lungs back? A microscopic flamethrower that can burn it out without damaging the good stuff?
I’m so glad I had this spring and summer. I felt better on the Cape, and I got to spend so much time with friends and just looking out at the ocean. There’s something about being near the ocean that puts your life in perspective. It’s reassuring, that’s what it is.
I don’t want to focus on being sick, and yet it’s a part of every day. I have some tricks up my sleeve, courtesy of pulmonary therapy—hold the air in my lungs, puff it out, repeat. Lots of good visualizations of healthy pink air pockets expanding and contracting. But little things are getting harder, Daddy. Showering can be exhausting. My lunchtime walks with Santino and Louise at work are getting shorter and shorter. It’s embarrassing, which I know is a dumb thing to say. But I’m twenty-eight, and walking around the block wears me out.
I have to have an energy plan for most days—if I shower and shave my legs, I’ll need a twenty-minute rest. If I want to see Sebastian and Octavia, I need to take a nap first, and a nap after, and I’ll probably be out of commission the next day, too. At work, I plan my bathroom breaks; it’s about thirty steps, and if I wait too long and have to hustle, it takes ten minutes to get my breathing back to normal.
It’s harder to hold Octavia, and my arms tremble, but I just can’t give her up. When I read to Sebastian, I have to look at the words on the page and plan when to breathe, because he gets upset if I run out of air . . . he’s too smart, Daddy. He knows I’m sick, and he’s scared, and it’s awful when he cries, my sweet boy. So I try my best around him. Oh, Dad, you would love him so much! He’s an angel. Well, a little demon sometimes, but mostly an angel. I can’t resist him. I’m smitten by them both.