Shine A Light On Me

I reluctantly began to recognize that I needed an outlet to reach my dad. I decided to start talking to him, which was strange at first but I did it anyway. Sometimes in the car, or at my desk after school. Sometimes I wrote emails to myself that were actually for him. It made me think back to the hospice nurses who had told us to keep talking to him, even when he was no longer able to respond back. Those words hung in my mind, in a different way now. What if he could still hear? What if he’s been waiting to hear me talk to him, wondering why I haven’t? So whenever I could, in case he could hear me I made a point to tell him how much I missed him, how much I loved him. It was nice to think that maybe he would hear it.

Sometimes I thought about the Voyager Golden Records that were sent out into space. They were two phonograph records sent on board with the 1977 spacecraft. The records consisted of various sounds and images intended for any intelligent life in the universe to hear and experience what Earth was all about. It was an incredibly sentimental human act and it’s still out there, deep in space; still playing its message. When I thought of talking to my dad, I imagined my words reverberating into unforeseen darkness like those records, out there traveling through the universe. I thought about what songs, words, or pictures I would send to him.

•

I watched the sci-fi movie Contact, for the first time in years. It made me smile, bringing back memories of seeing it with my parents. Eventually I watched Interstellar and I knew how much my dad would have loved it. He would have been thrilled at the depictions of different planets, especially the one full of violent ocean waves. I wished he would have gotten to see it. I never realized I was finally starting to become a little less fearful of doing things that might draw out his memories.  

January and February came quickly, as always with their suitcases of memories. I felt the familiar pressure wrap around me as the second anniversary of his death approached. I was still struggling and disappointed that I wasn’t magically healed yet. I was never kind to myself, it never even crossed my mind, how hard I was being on my own brain. I still thought of my dad a million times a day. Arriving closer to the second anniversary of his death, I felt a sudden urge to be more proactive about honoring his legacy but unsure as to how.

One day at school, my gold necklace got caught on my lanyard. Pulling down on what I thought were my classroom keys, I heard the sound of something snapping. I accidentally broke the chain! Frantically, I wrapped the chain and tiny gold heart inside of some notebook paper, and then placed it inside a baggie. At home I put it somewhere safe, then it became a nervous game of musical chairs, various safe spots until I felt satisfied with the best one. I promised myself I’d fix it soon.

•

For that entire first week of March, I wore purple and a pancreatic cancer bracelet. No one noticed my small act of bravery. Feeling cocky about my toe-dip visibility into our cause, I started to think I was doing fine. I had finally acknowledged Pancreatic cancer, so I’m basically all better now. I overestimated my progress and decided it wouldn’t be necessary to go off alone, to process the second anniversary. After coming to tears while at school, traveling back through memories, I found that I was wrong in that assumption. That second anniversary I immediately left to go back to the grocery cafe, same lunch, same spot.

“I came back to this grocery store like last year to sit alone and write. I wasn’t going to but I broke down crying the other day after school. For some reason all these memories came back, being on Bay Area Blvd and 528. Being in my car, the stores, the memories, the parking lots. Everything came back right in front of me. Our life is gone, yet it’s all still there, like a phantom limb. I can vaguely feel it existing, even though it’s not here with me.

…I think it’s important to write to help lessen the breakdowns. I wore purple all week for Pancreatic cancer, but who gives a shit? Nobody noticed. I should do more. I think it was too hard to confront before, but I’m ready now. I can finally say Pancreatic cancer, I can acknowledge the monster, say the words, face the truth.”

There had been a movie months earlier that I had saved about someone who lost their mom to cancer. Other People had been on my watch list for a while, but I didn’t have the courage to watch it. Around the second anniversary of my dad’s death, I suddenly felt ready. The movie was heartbreaking but unbelievably beautiful. I was amazed at how much I related to it, finally finding the comfort I had been searching for without even realizing it. It’s hard to put into words the validation you feel seeing your own pain reflected through another person’s experience. We were part of that same miserable club and seeing that made me feel less alone. It was absolutely moving. 

As soon as it was over, I knew that I wanted to finish my writing. Cancer had done us wrong and I couldn’t let it have the last word. Maybe what I wrote would be the pamphlet I never found for myself, some honesty and light in all that dizzying darkness. I did not accept my father’s last few months of life as something that I had to bury and forget. He was still my dad, I valued those days, no matter how brutal they were. 

There had been a deep, inert conflict in me that cherished those last days but felt pressure to let them go. Gradually, I began to move back to wanting to remember. My dad worked hard his whole life, he never had a single day to take any credit or celebrate it. There was no retirement party for all his sacrifices to our family or his health. Cancer took him and then it was as if he had never existed.

•

During April I found out about the Pancreatic cancer walk, Purple Stride. I signed up for the race. I was profoundly out of shape and had two months to practice. Frantically, I was trying to walk as much as I could on the weekends and after school. It was three miles, and sad to admit, I could barely do two. At the end of May, I just about destroyed my knees wearing new shoes like an idiot and jogging my three miles at a track the week before the walk. The day before, I knew I was in bad shape. My knees were stinging. But I was mad, stubborn, and I couldn’t back down. Jeez, I wonder who I got that from?

It was early in the morning and we drove two hours in the rain to Tulsa for the walk. It was the first time Jon and I ever fishtailed on the road. I was tired and cranky about everything. When the guy at the stand said there were no more small shirts, my face apparently looked rather unpleasant because even though he was much taller than me, he looked remarkably nervous. I felt a bit bad but I was also not in a good state of mind. I was surging with anxiety about the entire thing. I took the X large shirt and went on my way. 

I did not want any emotions. Never in my life have I ever enjoyed anyone seeing me upset. I wanted to be in control and was nervous that I might lose it. I was also much more concerned about my knees and passing out from the heat. I wasn’t in shape, I was at my first 5k in a humid city I’d never been to, for a race that was about the cancer that killed my dad. Emotions were not welcome and I was putting in an effort to keep it that way.

I survived the walk, but my knees didn’t. It took me a week to get better, laying in bed, legs swelling any time I got up. My knees would grind in pain for almost a year after. But that evening after the walk, I was proud of myself. I had “beaten the monster,” I could say the words, pancreatic cancer! I could even look at pictures of my dad! I did the walk, emotion free! I felt at the height of power after a year of suffering. 

Later that same day, I sat down with Jon and his parents to watch the movie, Logan. I had forgotten about my dad watching one of the Wolverine movies back during that last Christmas together. I also had failed to remember that Wolverine would die in that film, or that it might actually be depicted in a terribly, sad way. Once I realized all of these things, it was far too late. 

I kept it together for a while but then the next day I broke into pieces. The images of my dad in his little white shirts, emaciated in bed, paranoid and frustrated in his last weeks all came rolling back in. Then images of Logan battling a monster and a death he could not stop, seemed to play out as it had felt mentally for me. 

My mind kept seeing my dad in this character. The strongest person I’d known, his strength was polarized by his inability to be close to others, meanwhile fighting a battle he could not win. It devastated me. Watching Wolverine die reminded me too much of my dad dying. The next day I was in bed with swollen and stinging legs, crying, spiraling again. It was like watching all my progress evaporate before my eyes. I couldn’t see at that time that it was only bad days.

The breakdowns made it all seem real again. You can feel and breathe the memory just like you lived it the first time. I always felt disappointed when it happened as if I’d lost progress. Not seeing any flaw in my logic. I kept thinking my progress would be linear, like going up a ladder with up as the only option. I didn’t realize that pain and progress are entirely separate entities. I didn’t lose anything by being upset, it wasn’t a scoreboard but that’s exactly how I was living. Still, I remained in bed, mad and shameful. I agonized over how little pain I was in, comparing it to how much my dad had endured. The apologies came back, repeating out loud, how much I’d let him down. 

•

One weekend Jon and I were driving on what was a normally bright and sunny Saturday. As we passed by buildings on this pleasant morning, something flashed in my brain. Perhaps the sunlight, the sky, a certain building had triggered a memory. It felt and looked like the day we went to go get my dad’s ashes. I didn’t see it coming at all. In the parking lot, I cried, not saying a word. All the while normal Saturday traffic buzzed around us. Jon understood these moments. He knew without speaking that something had come back. I cried, cleaned my face and we went on with our day. Looking back I wish I had told myself it was okay to have those moments, it wasn’t weakness or “lost progress.” I wish I had been better to myself.

One evening while watching tv, I was in a fairly good mood and minding my own business. A Payday candy bar commercial came on. Before I had a chance to decide, an explosion of pain ignited inside my chest. I suddenly saw my dad sick, hurting, from his last coherent week. The candy bar he’d asked for. I saw the candy bar and I lost it. I wanted to scream at the tv. The anger grew and grew. I was livid at the reminder. I imagined growing into a giant monster, on a destructive rampage. I felt crushing despair for a few minutes, at this cycle I seemed to be permanently tethered to. Except this time I wanted to do something different. I decided to draw how I felt. It made me laugh.

After experiencing my dad’s loss I started to feel more proactive about showing solidarity to others in pain. I found an Alzheimer’s walk to take part in during the Fall. The crowd was massive, it looked four times the size of the Pancreatic Cancer walk. I wanted to support others and help their cause as I hoped someone would do for me. I wondered how many people would do that for Pancreatic Cancer survivors and their families? As I looked at the size of the crowd on the last lap, I thought about how little funding and awareness there was about Pancreatic Cancer. It frustrated me.