Two Sides of a Lifetime

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First fears (2019)

Our children each seemed so different at the moment they were born. Isabelle came out faintly disappointed. The world must have sounded better than it looked right then, in a delivery room at a hospital. Rosalind came out in a rage—red faced and hollering. And Caleb came out worried. “Dad?” he used to ask me as a toddler. “Is this a good idea?”

My sister Mandy once converted some home movies from our childhood. We all watched them together with our mother in the living room at the farm. Suzanne laughed at one clip of my father and I standing together in bathing suits, and I didn’t know why. “Whenever I look at you as a boy with your father,” she told me on the drive home, “I see Caleb and you but with different heads.” Caleb and I both stand the same way and sit the same way, which is the way my father stood and sat.

Rosalind took this picture two years ago. Caleb dresses differently now. One of his friends at school teases him, “You dress like a dad on vacation.” Then he cups his hand to his mouth and does an imitation of Caleb shouting, “Did all you kids put on sunscreen?” and, “Does anyone still need a towel?”

I didn’t expect to have a son. We didn’t expect a third child, to be honest, and I had resigned myself to being the only male in the house the same way a woman who grew up with only brothers might feel sad if she never had a daughter. My father had wanted to name me Caleb. It was an Old Testament name—Moses sent Caleb, along with others, to scout the Holy Land when the tribes of Israel were still in the desert, and Caleb was brave and loyal and driven to shape the future for his people—but my parents decided that the name was too unusual for suburban America in 1961. Suzanne and I liked the name because of the connections to my father and his family history. But we chose it because it represented a road not taken. Having been so powerfully attached to my father, having spent so many years measuring myself against him, we wanted our son to have a name that encouraged him to be different from me. Caleb is musical, which I am not. Science and math hold his interest, and they never held mine. He loves cars and bikes and racing, and he is generally much calmer than I ever was.

But we do both like to have a plan. When he was in sixth grade, Caleb chose to write and film a movie for a class. He emailed all his friends multiple times to schedule the filming. After about the fourth or fifth email, I asked him whether he had written the script yet. He hadn’t. Then he spent another evening emailing. I finally had to tell him that he couldn’t do any more scheduling until he had actually written a movie. Which he then did, after some complaining. The morning of the filming, without anyone suggesting this, he printed out seven copies of the script for the seven people playing roles, marked their lines in different colored highlighting, and then organized the copies in neat rows on our dining room table. It was a weekday. Everyone was coming at eleven thirty. I had to run to the office to interview someone, and in the middle of the interview Caleb called me. Knowing how worried he was, I excused myself and answered the phone.

“Dad? What about lunch? Everyone is coming at lunch time. Can we make sandwiches?”

I said we could.

“Okay, well, I checked. We have salami and turkey. But we don’t have enough bread. Do you have time to stop at the store?”

I said I did.

“And can you also buy some roast beef?”

Soon after I graduated from college, I visited my father’s brother Joe, who was probably in his early sixties then. We were alone in his kitchen. I sat at the table while he made himself a cup of coffee. He had this complicated way of heating his mug before pouring the coffee. Evidently, this required all his attention. I was observing him and wondering whether I would ever care so much about keeping my coffee warm when he started to speak. “The older I get—” He was finally pouring his coffee. “—the older I get, the more I realize how young Clint was when he died.” He turned to face me. “You miss a lot of life when you die at thirty nine.”

I have felt a sense of blessing, since I passed thirty nine, at being able to enjoy my children. Rosalind’s sculpture garden in our living room and then her photography. Isabelle’s drawing and her fascination with climbing trees. But in a way I didn’t with the girls, I marked the years in Caleb’s age. Growing up the only boy in the house, it meant so much to still be there as Caleb passed twelve and then thirteen and fourteen and so on. I realized that what I missed with my father and valued with Caleb were these ordinary household moments where our lives simply intersected, like the time I spent with my uncle and his coffee.

Caleb and I are both awake early, unlike anyone else in our family, and we often talk in the kitchen. “Oh,” I might say. “You have the milk out already. Do you want the last banana?”

When he is in a growth spurt, he allows extra time before school and makes himself an enormous breakfast. I come into the kitchen and he has every breakfast ingredient imaginable spread out on the counter. “What should I make for breakfast, Dad?”

He might cook eggs and bacon and toast and eat cereal as well as the last banana. He slurps his cereal and doesn’t realize it because he has his headphones screwed into his ears. I throw things at him from the other side of the kitchen, like an orange peel or a sponge, and he laughs at my skin-crawling irritation. This is when he monologues about cars or bikes. This is when I hear the stories about that arrogant freshman who plays the French horn and won’t shut up, or something his friend ate in one bite yesterday, or the time when he was heating up food in a microwave at school and some kid he didn’t know stepped in front of him, opened the door while it was still running, and took the cover off Caleb’s lunch just to see what he was eating. And this is what I miss so intensely, now that I am in the hospital.

When Caleb was little, we would ask about his day, and he would tell these long stories, in great detail, about everything that didn’t work out the way he had expected. He grew out of that, but he still worries and plans, plans and worries, and my illness has been particularly hard for him. He doesn’t have Rosalind’s power of denial. In that conversation with her, the one about modern medicine, he kept his own counsel, but he is too scientifically inclined and too generally skeptical to have complete confidence in any concept as monolithic as that. He didn’t want to upset her. And he seemed to question his own worry, “What it is wrong with me that I can’t feel as sure as she does?”

For almost two months now, he has been putting on a mask and gloves and coming in my room to witness me in various states of ill health—with fevers and without them, with oxygen in my nose and without it, a bag of blood on my IV pole, or a bag of chemotherapy covered with warning stickers—and then returning to ordinary high school life. Music takes up a lot of time in his high school life. Music is also very collaborative, and he is having more and more outbursts that the other kids don’t understand. He finally talked to Suzanne about one of these incidents.

“Do you know why you got in a fight this time?” she asked.

“Yes!” he yelled. “Because I am so stressed out!”

Suzanne stared at him for a long minute, which is what she does when the answer to the next question is obvious. “Do you know why you are so stressed out?”

“Yes!” he yelled. “Because Dad’s in the hospital!”

She asked him whether he had ever explained this to his friends. And he hadn’t. Most of his friends knew because their parents knew. But they were reluctant to talk to Caleb about it unless he brought it up first. He wasn’t bringing it up.

When they drive back and forth to the hospital, he climbs in the back of the car and puts in his headphones. He won’t talk, so his stress stays hidden until it erupts. We often play games when they visit me, and Caleb explodes in anger if he loses, like a much younger child. He had one tantrum about losing a domino game called Mexican Train, and we had to stop playing. The next time they visited, he suggested playing the game again.

“We can,” Suzanne said. “But are you going to be okay?”

“Yeah. I’ll be okay. It’s Zen Caleb this time. Not Angry Caleb.”

And we all laughed.

But he still started getting mad about the hand he drew or the sequence of play.

“Zen Caleb,” one of us would say.

“Zen Caleb,” he would repeat to himself. “Zen Caleb.”

Then the game was over. He and Rosalind both had plans with friends. There was a bustle of bags and coats and last-minute discussions about times and places. Then they left. In the silence that followed, I worried whether we really understood how often this was happening at school.

In the hospital, the back of the door dominates my room. People either open it when I don’t expect them to or don’t open it when I do. Friends and family are conscientious about visiting, but if you add up the hours in a day, I spend most of them alone. And everyone who visits has a purpose. They come to discharge a duty. Then another duty waits. This is true of the medical staff. They arrive for an examination, to administer medicine, or explain the results of a test, and then leave for another patient. This is true of my family. They pass an afternoon around the table in my room and then leave to run an errand or meet someone for dinner or make it to a movie. Life stops for me, and then goes on without me. I long for my life to simply intersect with someone else’s like I used to do with Caleb in the kitchen.

My IV pole follows me on six rollers—each attached to multiple legs protruding from a circular base, like a top-down, two-dimensional view of an octopus. It follows me to the bathroom, but doesn’t fit inside. I bump it over the threshold so the octopus base is half inside and the door can partially close. And while I sit on the toilet, the clamp on the base watches me with a wide-eyed look of concern, stretching out his arms to catch me, or hug me.

One evening, when I am down in radiology for yet another CT scan, a portable X-ray machine parked in a corner looks at me and then quickly looks away.

And I imagine him talking to me—a voice a little high pitched for his size, a way of bobbing his head and not looking me directly in the eye, and maybe also a limp handshake.

When Mandy wanted to visit with her husband and their daughters one Saturday afternoon, I said yes, even though Suzanne and Rosalind and Caleb would be there at the same time. “Are you sure it’s okay?” she asked. “To have so many people in the room?” My blood counts were still going down from chemo. I needed regular transfusions for red blood and platelets, and my neutrophil count (the type of white blood cell that fights infection) was zero. I was most vulnerable to infection. And it was February. There were a lot of diseases flying around outside my door.

Suzanne had the same question. “Isn’t this too risky?”

“It’s fine,” I said. “We’ll have a party.”

Then our friends Kurt and Angela were free that afternoon, and I invited them also. We ended up with nine people in my room. I kept sending Caleb and Rosalind out for more chairs, and the nurse could barely open the door. When we ran out of space for chairs, Rosalind and my nieces collapsed on the bed. Caleb sat on the windowsill, which was as far from everyone as he could get while remaining inside the walls of the room. I sat with him at the window and took this picture.

“This wasn’t okay,” Mandy said as they left. “And we shouldn’t have let the girls lie on your bed.”

I don’t know if it was my party or someone on the medical staff. Many nurses and doctors had been out sick the past week. But on Sunday night a violent coughing fit woke me up. I sat on the edge of the bed and coughed so violently that I threw up. Then I went to back to sleep and awoke with a high fever. Testing started immediately, as well as visits from other specialties. All day Monday, my temperature continued to rise. I woke up Tuesday morning with four doctors standing at the foot of my bed. I said to the attending, “I know I must be sick if four doctors are coming to see me first thing in morning. I prefer being lower on your priority list.” No one laughed.

I ran a high fever all day Tuesday. It would spike above 103 degrees. They switched up the antibiotics, but even with Tylenol they couldn’t get my fever down more than a degree. I needed red blood and platelets, but transfusions, particularly platelets, don’t work well when you have a high fever. The entire day was spent trying to get my fever below 100 degrees so I could get the blood I needed. They brought me a cooling bed, which is basically an air mattress with a rolling air conditioner attached to it. But they couldn’t do it.

Counting the team in charge of my care, about eight doctors were coming through my room. No one knew what was wrong. Everyone had a theory, and I insisted on hearing every theory. Infectious Disease found a particularly dangerous kind of fungus in my sputum. “I came running up the back stairs when I heard that,” the resident told me. For someone in my condition, a fungal infection could be fatal. The lining of my stomach was bleeding because my platelet count was so low. Gastroenterology had some theories about how that might be related to my fevers. Someone thought I might have an infection in my heart, and I developed two rashes, the size of mosquito bites, above one knee. With immune compromised patients, doctors are very interested in the skin. All sorts of problems can be indicated by rashes. Everyone in my legion of doctors examined my two mosquito-bite rashes, and I heard more theories about what was wrong.

The high fevers, the legion of doctors, the swirl of uncertainty—all the speculation about what could be wrong—brought back the confusion and desperation of those first weeks in the hospital. And I remembered my father’s struggle. In his few short months between August and March, every change was a step down, and any stability was only a landing on the staircase—a flat moment before another drop. My irrational fears, my animal fears, my first fears, returned. The fears that are impervious to language. The fears that hear no explanations. I will never go home. I will leave my wife and children. My son will mark his years with his son, as I have done, and wonder whether he will die of cancer somewhere between thirty nine and fifty six as we did.

But in the wide universe of dire possibilities, the cause turned out to be pneumonia. I had caught some version of the common cold, which became pneumonia instantaneously. For my fever, they gave me a dose of hydrocortisone. The steroid knocked the fever back. They could finally give me blood and platelets, and I started to recover. But for the next two nights I kept waking up at three with my heart racing and never falling back to sleep. I also felt nauseous. Around midday Thursday, I asked for something to treat the nausea.

Lisa was my primary nurse. “Would you take some Ativan?”

I smiled. “What don’t they market Ativan for?” They also offer it for sleep. If I were withdrawing from alcohol, I could take it for that as well. Ativan was originally sold as an anti-anxiety medication.

“Good for what ails you!” Lisa laughed.

“I don’t know,” I said. “I don’t think I’m anxious. Whatever we did for nausea the last time worked well.”

“Zofran?”

“Can we stick with that?”

“I’ll check with the team.” She left the room. The door closed. But then she stood there. I could see the shadow of her sneakers below the crack of the door. It opened again. “Doug? You should take the Ativan. You are anxious.”

I took her advice. I felt better. Because I was anxious. But I needed a second dose to keep my heart from racing in the middle of the night.