Every Note Played(66)

“Could the antibiotics clear the pneumonia and then he’d be like he was before this happened and breathe on his own?”

“This isn’t a spinal-cord or lung injury. This is his diaphragm no longer working. It can’t heal.”

“But he was breathing earlier today. Couldn’t this be just a momentary crisis and he could come off the vent and still breathe?”

“That’s very unlikely. I see about three hundred people in your position every year. And in the twelve years I’ve been doing this, I’ve only seen that happen one time.”

So there’s a chance. But it’s remote. And Kathy has had this horrific conversation over three thousand times. Richard wants to cry for both of them.

“If you were us, what would you do?”

“I’m not you, and even though I’m around it every day, I’ll never know what it’s like to have ALS. I don’t know your finances or your relationship, so I really can’t answer that. I will say this. If you choose the trach, every six months I’ll ask you, ‘When is enough enough for you?’ In our experience, patients who go on the vent typically get pneumonia after pneumonia. The disease doesn’t stop. Eye movements can be good for many years, but like I said, eventually he might be locked in.”

“What do most people do?”

“About seven percent get vented.”

“Why so few?”

“This is a very difficult, intimate decision. If Richard gets this surgery, assuming you’re his caregiver, your quality of life is going to go way down. I don’t care how kind or tough you are, you’ll end up getting something called compassion fatigue. It’s essentially PTSD.”

Kathy waits, perhaps thinking that Karina will have another question. She’s silenced. Kathy turns her attention back to Richard.

“In Massachusetts, if you decide to get the trach and later change your mind, you can elect to go off the ventilator in the hospital or at home with Hospice. How old is Grace again?”

“She’s twenty,” says Karina.

“She’s in college, right?”

“Yes.”

Richard blinks.

“If you wanted to see her graduate or get married, if you wanted to stick around a bit longer, some people choose to go on the vent for this one last thing and then elect to go off it.”

Grace graduates in a little over two years. He’d like to see that. He’d like to see her get married. He’d like to meet his grandchildren. He’d like to live.

Kathy sits on the edge of his bed so she’s now closer to eye level and puts her hand on his. Her eyes are the color of deeply steeped black tea, tired and kind. Her hand is so blessedly warm and human.

“Are you afraid to die?”

He blinks.

“I’m sorry to be so blunt. Are you afraid of suffering at death?”

He blinks.

“What else are you afraid of?”

Letting go. Disappearing. Not existing. There is another fear, lurking in the shadows of his consciousness, but he can’t identify it.

“I’m going to leave you and Karina with some information and a letter board. I know you haven’t had to use one of these yet, and it’ll be slow and frustrating, but it’ll give you a way to express whatever you need to ask or say.”

“How quickly do we have to make this decision?”

“I don’t want you to make this decision today. Think on it and think of questions, and I’ll be back tomorrow. He can’t be intubated like this for very long. This decision can’t happen over a week’s time. It can’t wait too long.”

Kathy goes over how to use the letter board. Richard only half listens. He’s more captured by the steady, rhythmic sounds of the ventilator, the push and pull of air forced in and out of him, the percussive music of his body being breathed. In. Out. In. Out. A clock ticking. Kathy finishes her tutorial.

“Okay, I’ll be back tomorrow. So we’re one hundred percent clear on the choices. Your choice is either to be extubated and most likely die, or you’re getting the surgery and asking Karina to take care of you twenty-four/seven. You understand that these are your choices and the consequences of each?”

Richard blinks and doesn’t look at Karina. He assumes she understands as well.

It’s either his life or hers.





CHAPTER THIRTY-ONE


Standing at the end of a long line in the hospital cafeteria, Karina waits to pay for her second cup of coffee. She’s in no hurry. The man in front of her is dressed in blue scrubs, carrying a tray of yogurt, granola, fruit, and orange juice. She’s hungry, but the thought of food makes her nervous stomach turn. More coffee won’t sit well in her either, but she needed something else to purchase, a reason to stay in the cafeteria, and coffee seemed like the simplest choice. She left Richard’s room in the ICU yesterday evening and hasn’t drummed up the nerve yet to return. She hasn’t picked up that letter board. She doesn’t know what he’s thinking, what he wants to do. She hasn’t asked him. She knows she has to. One more cup of coffee first.

If this were a movie, she’d have her hands over her eyes, her breath held, silently begging the woman waiting in line to pay for coffee not to go up to the ICU. If this were a book, she’d close it without turning the page. She doesn’t want to know his decision.