Mark was admitted to the hospital via ambulance to the ER last Tuesday. At 5:45 am the next morning, I returned to the hospital and looked at my phone. Battery power at 20%. I dug through my hospital “go bag”: my charger was missing. The nurse told me that the hospital only has one charging station — in the ER waiting room. So back I went to the ER to sit for thirty minutes and charge my phone. There were two receptionists at the front desk, and two men sitting in the waiting room chairs. Man #1 was talking to the receptionists about politics. “There’s a shiny devil in the White House, and he’s there with his whole family,” he shook his head. The nurses made comforting sounds. Man #2 looked at Man #1 for a long pause, and said “Hey, I know you, man, we did time together.” I could see Man #1 stiffen. He didn’t make eye contact. “Man, I’m trying to have a conversation here.” Dissuaded, Man #2 walked over and sat next to me. His eyes were red. “Hey, can I buy you somethin’?” His speech was difficult to understand. I just looked at him. “Whatda you like, liquor or beer?” It was 6:00 am. I wondered how often this pickup line worked. I said I had to go upstairs because my husband was there. “Aw, that don’t matter,” he said. He wandered away and tried to get the receptionists to give him some orange juice. They said they couldn’t because he’d already been discharged. So he checked back in to the ER so he could get some orange juice.

Over the past month, if only I could have gotten Mark to drink something. Not that he needed liquor or beer, for sure, but the orange juice would have been great. I gave him everything I could. I offered it all. He could tolerate less and less. Alma asked if I was counting his calories. At first I wasn’t, and then as time passed, I did. 1200 calories, 800 calories, 200 calories a day. I knew it was not enough. I reported it to the doctors over and over. No, we did not need to talk to the dietician again. I knew what to do. He would or could not do it. They weighed Mark. Rationalized with him. Urged him. Mark is nothing if not a rational guy. This was not about logic. He told me one day that he couldn’t seem to communicate with people why he couldn’t eat. People who have had cancer, like my mom, understood. Everyone else, including me, couldn’t.

Mark fell off the tiny ledge of wellness he was clinging to so fast it was startling. Last Monday, the doctor thought he could hold off on the feeding tube. “Try to drink two Ensures a day, Mark, and then try making it three.” By Tuesday, he was admitted to the ER and by Wednesday, they decided he needed the feeding tube. I somehow hoped that the feeding tube would be the magical device that would turn things around quickly. Instead, he quietly watches people when they talk. “Do you have thoughts in your head, and you can’t figure out how to say them?” I asked. He nodded.

The machine of Mark runs on calories, the units of energy that run our cells. Our cells take calories and use them to make energy for critical functions that keep us alive: growth, reproduction, maintaining structure, and responding to environmental changes. It’s a balance of energy intake and expenditure. Once Mark descended into a cycle of not-eating-leading-to-not-wanting-to-eat, his body began trying to buy him some time to find food by preserving his core organ functions. The less food he ate, the more his body needed to look for other sources of energy. Once the human body uses up fat reserves, it moves on to finding proteins to break down to extract energy, like the proteins in muscles. Energy gets funneled to the critical organs. The brain is lower on the list than heart, lungs, kidneys. His body quickly began adapting to the circumstances it found itself in. Survival.

The person of Mark runs on love. When we first starting dating, he told me about how he grieved after his wife died. He said he’d be walking down the hallway at work and stop, not sure which way he should go. He would go to each of his kids every night and hug them and tell them he loved them. He felt like he needed to be both mother and father to his kids now. He cooked meals, packed lunches, took the kids on hikes, and did his very best despite the grief that was swallowing him whole. After a year, he decided that there could still be more to life. “I felt like I had more love to give,” he said, and so he started dating.

On Monday around lunchtime, my kids came to the hospital to visit Mark with me. Our friend Lizzy joined us. After my separation years ago, money was a concern. My kids and I took in a tenant to help cover the bills. Lizzy and her son Toby lived with us for two years. She is wise and hilarious and irreverent. We love her dearly. Lizzy was with me the night Mark consented to the brain surgery. Looking back, it seems crazy that anyone thought Mark was able to give consent, as the doctors knew the size of the tumor in his brain (we did not). I was sitting there in shock. Lizzy grabbed the consent forms and read through them out loud. “Mark, do you understand that you are giving consent for blood transfusions?” She went through all the critical elements with him one by one, making sure as best she could that he was agreeing.

Lizzy went back to visit Mark again after work on Monday. She stopped in the hospital gift shop and got him the glitziest stuffed animal she could find, which she dubbed “Love Unicorn.” She played Steely Dan for him on her phone. They sang together. He told her “I just wanna pack it in and go home.” The next day, I put Love Unicorn on the back of Mark’s wheelchair. When I came the following day, someone had moved it into Mark’s bed. Love Unicorn is our proxy, keeping watch over Mark when we aren’t there with him.

Now Mark is an an acute rehab hospital. He gets three hours of therapy every day: speech, physical therapy, and occupational therapy. The speech therapist sat with him at lunch yesterday, feeding him soup while he sat in his wheelchair, monitoring his swallowing. They are worried about him aspirating. They are teaching him techniques to swallow safely. Until Mark is able to safely and reliably take in enough calories himself, I have been taught how to feed Mark and administer medicines through the feeding tube. “You might want to wear gloves when you are using Mark’s feeding tube, because gastric juices can back up into it,” the nurse instructed me. The physical aspect of the task will get less daunting; the psychological adjustment is going to take more time.

Life broadens for us, and then narrows down to a fine point. If we’re lucky, it broadens again. It’s the lungs of life that keep expanding and contracting. Mark and I are living at the extremes. He travels along the outer limits of life. I travel beside him in this quiet and still place, and then am periodically flung into an orbit of love and care so powerful and bright I can barely look at it without tears. We keep going. This moment. This now. It’s enough. It has to be.

2 thoughts on “Perspective

  1. Diane,
    You wrote in one post about Mark’s tissues being “friable.” All I could think is how friable you must be, mentally, physically, spiritually. And then Alma posted and they write as beautiful as you and my heart thought how “friable” you all must be. I looked up the antonyms of friable to know what specifically to pray for for ALL of you… “resilient, strong, sturdy, tough.” But you are all these things too. I guess I just pray you feel more of that than the other today. You, Mark and your whole family are being thought of and prayed for.
    With love,

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