CHAPTER SIXTEEN
Karina uncaps the plastic MIC-KEY button that lies flush against Richard’s skin two or so inches above his belly button, attaches a small length of tubing, and begins pressing on a fifty-milliliter syringe plunger, delivering a total of 500 cc of Liquid Gold over the next half hour directly into his stomach, his fifth and final “meal” of the day. They watch a rerun of Friends on TV while they wait for the syringe to empty.
The past three weeks have been all about tubes. After his nearly fatal choking episode on Christmas Eve, Karina took him to the ALS clinic. His neurologist, pulmonologist, radiologist, speech-language pathologist, and gastroenterologist listened to what had been going on and assessed his breathing and swallowing. Two major things were discovered. Two monumental decisions, both involving tubes, were made. The mother of all decisions, involving the mother of all tubes, still awaits a verdict.
First, he had a swallowing study. He drank barium dissolved in a thin liquid and sputtered as he swallowed. He next consumed barium mixed in applesauce and had to swallow several times to clear the feeling of mush stuck to the side of his throat. He then suffered a violent coughing fit trying to eat the tiniest bite of a bariumsprinkled cookie. A radiologist and the speech-language pathologist studied the X-ray video and determined that his ability to reliably and safely swallow had become significantly compromised in the past three months. No kidding.
The muscles of his tongue and palate have further atrophied, making them weak and lazy. Most dangerous, his epiglottis is slow to close off his larynx while swallowing, which means that food can be aspirated into his trachea and lungs. This is what likely happened with the makowiec on Christmas Eve. While liquid milk shakes won’t lodge in his windpipe like poppy-seed cake, they can drain down the wrong pipe and drip into his lungs, causing aspiration pneumonia. Anything that goes into his mouth now could easily kill him.
Not yet ready to surrender to dying, he surrendered to a feeding tube. He had the surgery the day after Grace returned to school. The twenty-minute procedure was straightforward and routine for his surgeon. Dr. Fletcher fed an endoscope through Richard’s mouth, down his esophagus, and into his stomach. He then threaded a thin plastic tube through the scope and out a small hole incised in Richard’s abdominal wall.
Karina waits a good ten minutes after the first 250 cc for his stomach to settle before delivering the rest. When given too rapidly, he gets too full too fast, nauseous, and vomits. Liquid Gold has a foul, acidic, nutty flavor on the way up that makes him cringe just thinking about it. That stuff was never meant to be tasted. Thankfully, Karina takes her time.
When Friends is over and the final food syringe is emptied, Karina dissolves his evening meds in water and delivers that through the syringe as well. The water feels cool and refreshing and weirdly quenches his thirst without ever touching his lips. She then flushes the tubing two more times with water, recaps the MIC-KEY button, and lowers Richard’s lifted shirt. There. Done with dinner or his nightcap or his feeding or whatever this is called. His stomach is now filled with five hundred calories in a half liter of liquid. He can’t say that he’s hungry, but he’s hardly sated. Although the service was impeccable, he’d give the meal itself a one-star Yelp rating.
He remembers when he first started touring, he ordered steak from room service every night. By maybe the eighth or ninth night, he couldn’t stomach even the thought of one more steak. He’d had his fill. He ordered pizza and didn’t touch another steak for months. The only item on the room-service menu now is Liquid Gold, every meal for twenty-three days straight and counting. What he wouldn’t give now for a medium-rare dry-aged New York strip.
He tries not to think about food. For one, it’s torture to imagine what he can never again have. Second, like Pavlov’s dog anticipating the steak his master is about to plop in its dish after the bell is rung, remembering food makes Richard’s mouth water. While the PEG tube eliminates the potential threats of eating and drinking, he still has to contend with his own saliva, which, like any liquid, can go down the wrong pipe when swallowed.
Even with the help of the glycopyrrolate, his drool, which has for some reason become the consistency of Elmer’s glue, is constantly accumulating, either spilling over his bottom lip and hanging from his chin in shimmering, stringy ribbons or gurgling at the back of his mouth. Thinking about steak turned the faucet on. He’s gurgling.
Karina flips on his new suctioning machine, pokes the wand into his mouth, and slides it around in there, vacuuming between his teeth and gums and under his tongue, slurping up his excessive spit, drying out his flooding mouth. He feels like he’s at the dentist every time she does this.
The second big discovery at his clinic appointment was the treacherous state of his breathing. His forced vital capacity, the amount of air he’s able to forcibly exhale, was down to 42 percent. Over the past three months, he’d started to notice that he was regularly out of breath when walking from room to room, that he had to pause every four or five words when talking because he was out of air, and that he was speaking only on the exhales.
“Are you waking up throughout the night?” asked his doctor.
“Yes.”
“Are you starting the day already fatigued?”
“Yes.”
“And do you have a headache when you wake up?”
He did, almost every morning for weeks.
“You’re hypoventilated during the night. You’re not getting in enough oxygen, and you’re retaining too much carbon dioxide. I want you on a BiPAP.”
He had no idea that his insomnia and morning headaches were due to a continual lack of air throughout the night. So now he sleeps with a mask attached to a machine by a long tube. It’s ten o’clock, and the only thing left on his exciting daily itinerary is getting hooked up to the BiPAP.
Karina fills the humidifier and plugs it in. Richard watches her weary but focused eyes as she works. She applies Vaseline with her pinkie to the many raw sores on his face. The moist air and prolonged contact of the mask against his skin every night have caused it to break down, creating a painful rash. He tried switching to nasal pillows instead of a full-face mask, but he couldn’t keep his mouth closed while sleeping and found wearing the chinstrap to keep it shut too aggravating. So he wears the full mask and endures the sores. Karina wipes her hands on a towel, turns the BiPAP on, then secures the mask over his nose and mouth.
The relief is instantaneous. Initiated by his own inhale, air is forced in. His lungs fully inflate, and his rib cage expands. When he exhales, the machine inverts the pressure, and air is forced out as if his lungs were a pair of bellows and the machine were pressing the handles together. Every night, in this moment when Karina seals the mask onto his face, he realizes exactly how labored and shallow his breathing has been all day, as if he’s been wearing a tight corset around his lungs since morning and Karina finally released it. With the mask on his face, he breathes an abundant flow of sweet oxygen in and carbon dioxide out, and a deep tension lifts out of his body like steam rising off a hot cake. He won’t suffocate in the night.
His pulmonologist says that his forced vital capacity appears to be declining at about 3 percent per month. The BiPAP is only capable of producing pressure that supports breathing. It doesn’t breathe for him. It breathes with him. At some point, the BiPAP will no longer sustain him. The only options then will be death or a tracheostomy tube coupled with mechanical ventilation and 24-7 care. Like the medium-rare dry-aged New York strip, he tries not to think about it.
While the introduction of the BiPAP has meant a better night’s sleep for Richard, it has meant the opposite for Karina. She adjusts the mask, making sure it’s entirely sealed, knowing without question that, like all things, the seal is temporary. When he yawns, when he scrunches up his nose because it itches, when he turns his head to the right, the mask can come loose. If it does, the machine will then sound an alarm, and Karina will have to get up to readjust the mask. Several times a night. She sleeps on the couch in the living room now to shorten her commute.
He’s like a newborn, and Karina is the sleep-deprived new mother, a walking zombie. But with newborns, there is light at the end of the tunnel. The baby starts eating solid food or gains weight or turns one—some developmental milestone is achieved and miraculously the baby sleeps through the blessed night. There is no light at the end of this tunnel, no developmental milestone that will graduate Richard from needing assistance all hours of the night. Unless they consider his death a milestone. Maybe Karina does.
He watches her face, her pretty green eyes. She’s inspecting the perimeter of his mask, but because the mask is over the midline of his face, it looks as if she were studying him. Her eyes appear dull, disconnected from the source of any internal spark. Her long hair is gathered into a low ponytail, but a section from the front has fallen loose, draping over her right eyebrow. He wants to reach out and tuck it behind her ear.
She looks him in the eye and sighs. He wants to tell her that he’s sorry that she’s so tired. He’s sorry that he has this and had nowhere else to go. He’s sorry he’s become such a burden to her. And then suddenly, strangely, for the first time, he wants to tell her that he’s sorry for all of it.
And he’s sorry without the usual accessories, the excuses that absolve him or an equivalent list of her crimes weighing down the other side of the scale, blaming her, making them even. There is only his apology. He’s sorry he was so careless with her, their family, their life. He’s sorry that he cheated on her, that he didn’t know what to do with his loneliness, that he felt unappreciated, unseen, unloved by her and didn’t know how to talk to her about it. He was lonelier in bed with Karina than anywhere else on the planet. He never told her. He remembers those green eyes looking straight at him, simmering with resentment, punishing him, looking straight through him, indifferent, shunning him. He was too afraid to ask her what was wrong, too afraid to hear her answer. They never talked about any of it. They were complicit in their mutual silence.
Her exhausted eyes, likely praying that the mask stays put for at least a couple of hours, connect with his. He wants to tell her now that he’s sorry, before she leaves the room, before this revelation and urge to confess evaporate, before he goes to sleep and, as if it were a dream in the nighttime, he awakens in the morning with only the vaguest sense of having known something. He holds his apology like a helium balloon, the slipknotted string fast loosening from his wrist, soon to be a dot in the stratosphere. He has to say it now or possibly never.
“I’m sorry.”
But his voice, already thin and weak like the rest of him, can’t be heard through the mask, over the vacuum-cleaner-like whir of the BiPAP.
“Good night,” she says.
Karina turns off the TV and the light, leaving the door open a crack as she disappears from his room without ever hearing him, not knowing.