Shine A Light On Me

February was ushering in a new phase that we weren’t prepared for. We had gotten so used to our routine that we never considered it would all change. The collection of medications, treatments and general failing health were causing my dad to have unpredictable bowel movements. Months before he had been struggling with constipation but now he was having the opposite problem. Now he was having difficulty getting to the bathroom in time, which for someone who is frail and cannot move or barely walk, is a big deal. We told him to use the hall bathroom that was closer, but he refused. Why? I tortured myself with that question constantly. I guess he didn’t want to use our bathroom out of embarrassment.

One day he was desperate for something different to drink, anything to break up the monotony of water. Attempting to do something positive, I said I’d make him green tea, not thinking how bad that might be. Within thirty minutes after drinking it he began to sweat and feel dizzy. He almost had a breakdown. He went to the bathroom, came back, and collapsed onto the chair, somehow more drained of color. “I didn’t think I was going to make it, I thought we’d have to call an ambulance,” he said exasperated. 

As he sat there, covered in a cold sweat I began to realize my stupidity. I had done this to him. Just like dropping his foot on the floor, letting him sleep too long, and now this. I felt as though I had fallen through the deepest fold into the earth, broken. This mistake would haunt me for years. What the fuck was I thinking giving him caffeine? I should have known better, I should have been better. Like a mallet, the thoughts struck me over and over for years with unrelenting guilt.

•

At night I continued listening to Faith No More. Listening to metal was not something I planned on in my life. I wanted to scream all the time. I was becoming more consumed with anger, not sadness. I worried about the person I was becoming, how would I ever stop the anger? It took everything in me to hide it from the rest of the world, twenty-four hours a day, seven days a week. I lay on the bed at night blank, expressionless and silent in a cage of memories and hopelessness. I felt like a zombie. The music helped to diffuse the anger, siphon it off, and transfer it elsewhere for a little while. It was the only way to get through it, an unlikely comfort.

•

We had a second trip to the sushi restaurant after another treatment. He barely ate this time, he looked worse. I still remember the faces of some of the workers there, staring in disgust, as if I couldn’t see. I felt myself coming to terms with the fact that things were, somehow worse. This was not enjoyable, this was not a happy lunch like the time before. 

After we came home, he always wanted to stay in the car. We went inside while he lay across the back seat, door open, legs dangling off the edge. It was the only time he was outside, the only time he would see the sky, feel the air. The same spot where we’d set up the telescope, all those years ago.

It was early in February, a Sunday. Better Call Saul was going to premiere that night. I had been looking forward to it for a year, way before my dad’s cancer was ever discovered. On this night I was in the back of the house with the second tv on, set up to watch because I didn’t want to bother him. As the show started, I heard a strange noise. I realized it was him trying to quickly get to his room to go the bathroom. Then I heard a loud sound, something bad. 

Unsure, I walked into the hall and saw my mom turning the corner into their bedroom, where she then gasped. I walked into the room behind her and saw my dad on the floor. There were sounds of pain, sounds I struggled to forget for years. There was a terrible smell and the quietest room of chaos. My dad’s eyes were white with pain. It felt like we stood there for minutes doing nothing, but I think it was the shock of the moment making it seem that way. The strongest, toughest, most reliable person in the world I had ever known was in front of me, on the floor. But this person was now vulnerable and helpless. Something that had never existed in his life, nor my own. 

My mom stood in shock, unsure how to help the man who never wanted anyone to ever help him in his entire life. I tried desperately to seem useful, I quickly muttered, “I’ll go get paper towels.” I flew down the hall and went out to the garage. I grabbed the giant package of paper towels, my body surging with adrenaline, anger and agony. I swung the massive bag repeatedly over my shoulder onto the concrete floor. Over and over, slamming them into the floor, as hard as I could, rapidly, uninterrupted for a full minute. Every muscle in my body went from tense into a wincing pain from the release. After exhausting all of my anger I stood breathing raggedly, sweaty, eyes stinging with tears that never arrived. Then quickly I wiped my face and went back inside, grabbed the bleach, and started to clean the floors.

Respecting my dad’s wishes, I did not go back into the room. We knew immediately there would be no hospital, no ambulance per his insistence. I gave my mom some bags, paper towels, and went back to clean the rest of the house. She bathed him, helped him out onto the bed, and dressed him. Through the crack of their door, there was a sliver of his reflection projected onto an old family photo outside their door. It was a picture of me and my sister with him when I was about three. A young, burly dad as I always remembered him, holding my tiny frame, my sister perched at his shoulder. And now, there on the surface of that framed image I’d always taken for granted was his current shrunken body. At that moment I didn’t understand why this was happening. Why was this being shown to me? 

•

An hour later, looking shell-shocked, he sat in his recliner as he drank his tea and took some painkillers. He made it clear he didn’t want any doctors, he was not about to be at the mercy of another jaded hospital. He felt hospitals meant entrapment at this stage. He lost all faith in their purpose for he couldn’t be saved. If he could endure it all without the cold, sterile suffering of hospital intervention, he would. Together, we then sat and watched the episode that I had attempted to see hours earlier. We sat like normal, as if the nightmare hadn’t happened, as he wanted. Every muscle in my body would remain gripped with fear for another twenty four hours. 

I was supposed to start my menstrual cycle the next day, but it never happened. Another day went by and nothing. I started to propel myself into the idea that I was pregnant. The idea that something special was happening, that my dad would live on through this miracle, an unexpected surprise. I wanted to believe that this was a hidden path. I would have a light at the end of the tunnel, or so I hoped. I kept this quietly to myself.

•

Later that week he had another trip to the doctor scheduled. He complained that he stank and needed to scrub the dead skin off of his scalp. He first requested a clean shave. He sat in his recliner slightly perturbed that we were far too petrified to do it for him with his sharp bones protruding around his jaw. Curtly taking the razor from us, foam all over his face, he aggressively pulled stripes of lather one after another. I held warm wet towels while my mom held a mirror. 

The task to wash his head proved to be much more difficult. In the kitchen my mom had the sink sprayer, he stood hanging his head down over the sink, elbows propping himself up. My mom attempted to gently scrub his head with a soft bristle brush. Eventually, he grabbed that out of her hands and started scrubbing his scalp himself. Viciously he scrubbed until he told me to take over. I did, in the same manner, moving quickly until he said in a small voice, “that’s too hard, Shell.” My mom made a hopeless face. No matter what, you couldn’t win. 

On the day of the appointment, I helped him get dressed, this time he laid on the bed, unable to dress himself anymore. My mom and I pulled his feet into each pant leg. I struggled to put his usual socks over his terribly swollen feet. Things had gotten worse and every time it did all I could think was, how? He couldn’t even find the strength to do the little things anymore. This time, at his appointment, he would have to use a wheelchair. He couldn’t have been more irritated about that. He too hated admitting he had gotten worse. In our everyday battles this was another defeat. The small victories were disappearing.

He reported a dream in which he was lying in bed, in the dark and could see a figure at his feet, “I kept putting my hand out to them, but they wouldn’t take it.”

With constant pain and struggling to eat, the doctor prescribed a type of synthetic heroin to help with “everything.” We mistakenly believed it would be a good thing. Up until this point my dad had been managing to eat at least once a day. The new medication put a stop to that normality. 

•

It was Valentine’s Day, a Saturday. I remember because it was so sad. While at the drugstore I bought myself some chocolates with a little kitten on the tin. I brought home the requested food from Wendy’s. For some reason I felt the need to tell the lady working at the cash register about him. Maybe because I had ordered so much food or maybe because I looked like shit. I explained that we had to try anything so that he might be able to eat. 

Maybe I also told her because I was lonely in our sad death club. I wanted someone else to know we existed. It was a beautiful day. The air was crisp and dry enough that the bad wiring in his car radio actually came on, chasing the silence away. The old song, More Than Words played for a brief moment, causing me to smile sadly. I hadn’t heard it since I was a kid. At home, he didn’t eat much of the food. We all then decided that he should try the new medication. It was a tiny, round, reddish ball that would usher us directly to the end. In some ways, Valentines feels like the real day that he died.  

We had one last normal afternoon, he selected a bit of chocolate from the giant tin heart I bought. He took the new pill, in hopes it could free him of pain. It was late in the afternoon. The pill knocked my dad out for almost twelve hours straight. He wasn’t awake to drink water, eat, have tea, talk, or anything. Instead of helping him with pain, it took him out of the world entirely. My mom and I began to panic. We didn’t know what to do but we knew that oversleeping was not good. He continued to be out of it for almost twenty-four hours. 

When he finally came back to normal the following Sunday night, he spoke as if he’d been somewhere else. He talked about how much he hated it, that he couldn’t wake up. He also told us a dream in which he was in a giant place, like an airport, massive, with tons of people all around him. He said people were speaking in different languages, some were singing, others chanting. My mom and I looked at each other. It seemed to be another step of him leaving us. I don’t know if his dream was merely his brain hypothesizing a stage beyond this life. A manifestation of what he thought leaving this earth would look like, as an artist might imagine. I still think about it and wonder.

•

The week that followed would be our end together. My dad’s fragile schedule had been compromised by that pill. With the disruption of his schedule, he began sleeping more and eating less. He tried desperately to eat, but could not push himself to eat even three bites of food. Something he had succeeded at a week before. I saw his face each time, full of disgust, with a mug full of soup, eating one cracker. It was all crashing but he still questioned, “We gotta find something I can eat.” The growing guilt that I was failing him started to obscure my sanity. My mind and thoughts felt fractured, disconnected, and nervous. Later that night I wrote in my journal. “I’ve traveled to someplace. I don’t think I’m ever coming back.”

It had been a month since he ventured to his favorite Chinese buffet, where he’d attempt to calorie load as much as possible. His mindset had always been to gain weight, but the cancer didn’t care. His stomach and organs were shutting down. During this week my dad would ask for specific things, sometimes a random craving. I started to consider that perhaps he wanted one last taste, knowing he was nearing the end. 

One evening he requested a Payday candy bar. So while on my usual food and medicine errands, I bought him one. All that was available was a king-size bar. When I gave it to him, he could barely take a bite. With a pained face, he gently handed it back in what was either disgust or exhaustion. I put it in the cabinet, where his stash of candy had always been. 

•

In a fragmented conversation one night, my dad instructed that there would be no funeral, no anything. He did not want anyone to mourn him. “Everybody just needs to get over it,” were his precise words. My mom and I sat quietly. Eventually my mom got up and left. My dad was never particularly fond of organized religion but took offense at the idea that he didn’t believe in God or have spirituality. He didn’t have control over dying but would control that he wanted to die in private. As far as he cared, we were his immediate family, the only people that should be around. He didn’t want anyone else.

He would be cremated but beyond those circumstances he didn’t care to be memorialized. He wasn’t sentimental. He wasn’t giving anyone the sappy or sweet moment they’d hoped for. I never questioned it because it was about on par with what he had been like for my whole life. When he expressed these demands, my mom retired to the back of the house, most likely to be upset. I sat on the couch like a bag of warm jello in the shape of an alert human, trying to understand how our life would be without him.

I was watching the clock of his life nearing the final hours, cursing his hatred of emotions but still hopelessly obliging. I wanted to cry, I wanted to hold his hand. But that wouldn’t be normal, therefore a breach of our contract, our unspoken promise to maintain the normality we’d practiced our entire lives. That’s who my dad was, he wasn’t going to be magically changed by the threat of death.

•

On the final cold Monday of February, my mom and I were in the kitchen washing dishes. As she looked at me I noticed there was something strange about her face but kept on my menial task. As I stood over the sink I kept wondering what seemed off. “Come back over to the light,” I asked her. She came close to me and I looked into both of her fully dilated eyes. 

Holding my fingers far out, then slowly moving them toward her, they remained unchanged. Two black discs reflected back at me. I tried to stay calm, for her sake and my dad’s. My mom had a small stroke ten years earlier. I was always worried about when a second attack might take place. I calmly told her that we needed to see the doctor… “just to be safe.” She made a last-minute appointment with our doctor, we tried to be discreet and keep it from my dad.

My elaborately stacked deck of cards, consisting of carefully controlled emotions, was not welcoming of this new situation. I went to my room and from the closet called Jon, already sobbing. I was scared to death, I didn’t know what to do and I was fairly sure I couldn’t handle another stressful event. After giving me a passable amount of reassurance, I hung up with him. I rushed my mom to the doctor, and since it was close by, I went back home to tend to my dad. 

Angrily he asked, “how did she forget about a doctor’s appointment?” I then decided to tell him the truth, just so he wouldn’t be mad at her. I emphasized it was only a safety precaution and tried to appear relaxed but it didn’t seem to work on him. He let out a defeated sigh. Sadness wore down his eyes that he never recovered from, followed by a flash of regret at his irritability. This wasn’t what he wanted for me, for her, anyone. Before I left to go pick my mom up he told me to, “drive calm.” Our family doctor did all the usual tests to rule out a stroke, before informing my mom that it was simply stress and lack of sleep. Knowing what he told my dad about his weight loss, a snide and bitter part of me thought, how would you know?

•

For once it was an actual cold and dreary day. The ground was slick with wet leaves while the wind carried humid icy drafts that you would find in October. In Houston it was the final days of winter. My mom was back at home with my dad and I was out on errands. My dad requested another heating blanket and some soup from his favored Chinese buffet. At home the soup remained untouched, simmering in a pan. He had one bite. 

My dad seemed entirely disconnected. For the first time, his spark of resilience and determination seemed permanently gone. The awareness that he and my mom were no longer in control and that I was left to deal with it all seemed to break his spirit for good. My dad was no more. The phone rang, it was his good friend from work again, the one who he had done the big voice for, weeks earlier. My mom held the phone out to him. Closing his eyes and with a face I’d never seen him make, of despair, he shook his head no.

•

Our last trip to the doctor became more like a funeral. He had to use a wheelchair as we went inside. Unfathomably, he was still unyielding in plans to go ahead with the next treatment, even though he was only eating a few bites of food each day. I was deeply worried about him. This was the frailest he’d ever been. I was anxious about being responsible for his safety. He didn’t want to admit it was over. He asked the doctor about doing more chemo. The room was silent and the doctor sheepishly tried to say it didn’t seem plausible, then asked what my mom and I thought. 

In one of the worst moments of my life, I said what I thought, “I don’t think it’s a good idea. I don’t think you can handle it. I’m worried about your safety. You barely managed this last one… and now, you weigh even less.” The room remained quiet, the doctor looked down. My mom was pained and motionless as if she had been robbed. My dad’s face was silent, sitting in his wheelchair. His shoulders crept up to his ears, his head low. 

I watched my father’s gray whiskered face, sunken, studying what seemed like a math equation on the floor. He didn’t speak. It felt as though a million arrows had been plunged into his body, all by my words. At least that’s how it felt for me. I honestly don’t recall what eventually was said because it didn’t matter anymore.

I loved my dad and I desperately wanted him to live. I wanted to keep going but I couldn’t stand by and watch him jeopardize his physical state anymore. My denial had come to an end after he fell, seeing how dangerous things had escalated to. It was the worst feeling, the worst moment. It wasn’t fair. I wanted him to live, not to die from cancer. I also didn’t want him to die busting his head open, falling from being dizzy onto the floor. I doubt the doctor would have allowed more chemo anyway, but he wanted the words to come from someone who mattered. 

Either way, we had two options that both led to my dad dying. Chemo or accepting the end. This choice made me angrier. I hated that I had to be honest. It made me think about something he told me as a kid, “being right doesn’t matter, nobody cares, it’s not important. Being right doesn’t mean shit.” At the time he had meant more about arguing with uncooperative people who don’t want to listen to reason. but I felt now the words were still appropriate. Of all the horrible memories, this is the one I hated most, the moment my dad realized he would die far sooner than he had planned. The last piece of agency over his life and body were taken as we all watched. I was the one who finally ended it.

•

Back home my mom escaped to somewhere else in the house. My dad sat in his chair, the tv buzzing in front of us. Under the pressure of the room, I felt compelled to ask for forgiveness. “I’m sorry. It feels like I betrayed you by saying what I did…” I told him from the farthest corner of the couch. More relaxed now and remarkably calm he said, “No it wasn’t. It was a relief, to be honest.” As we sat there quietly he continued, “Thanks for being here, Shell. We couldn’t have done all of this without you.”

That Friday my dad dejectedly began to see what the next steps would bring, all the dangerous possibilities that came with it. My mom and I would be responsible for whatever worsened state he’d now enter. He likely had fractured his ribs from falling two weeks earlier. We knew things were becoming riskier. My mom and I were terrified and it was probably showing on our faces. The next stop was death in a circumstance we knew nothing about.

He told my mom it was time to go ahead and call hospice. I still sat on the couch as he remained in his recliner, my mom in the kitchen setting up all the details. Off the phone, she came around the corner, “They’ll be here later this afternoon to set up a bed.” Then she shuffled off to tend to another task on an endless list. We sat quietly together. On tv the news reported that Leonard Nimoy had passed away. My dad faintly chuckled, grinned, and looked over at me saying, “He beat me. By just a few days.”