A note to parents: this post is not intended for children.Tossing and turning since 10 p.m., nothing seems to work. Pablo snoring away next to me, the daily end of life has not come to me. I cannot fall asleep. This happens every Monday night.
Tonight, as Pablo fell asleep on me in the fort, his breathing deepened, and he nestled his body into mine. This is my favorite part of being a parent. He needs me. He loves me. I am his father, and I am here to do my simple part of just being here. Despite the simple harmony of that moment, the Monday Night Current of Anxiety rose in me.
After Pablo fell asleep, I lifted him, laid him on his pillow, climbed out of the fort, and went downstairs. I could not fall asleep. Jo Ann was doing her Novena, so I went to Grady's room, and caught up on email, thinking that'd get me in the sleep zone. It didn't. But I went upstairs, climbed into the fort and tried to force myself to sleep. I rose again, this time heading for the kitchen. I needed some Elmo-Os.
I've climbed 10,000 feet on my bike in the past three days. My legs ache, feel heavy. When I push that hard on the bike, I often wake up in the middle of the night and have to ingest some calories. It's not hunger pains specifically that wake me–it's an overall soul coughing that radiates from the insides of my bones. It's quite satisfying, really, when it's not attached to a larger event like it is now. It sure beats waking up with a hangover, which was my lot in life prior to seven years ago. Usually, the eating calms me down, and I easily fall back to sleep. Not tonight.
As I continued to search for the magic position of my body, the blanket, the pillow, I kept telling myself, 'It's like I just got back from London, and have to wake up early LA-time for an important appointment. You're going to be OK in the surgeon meeting tomorrow.' When that distraction wore off, my mind dropped down to the truly tough stuff: real, bona fide fear.
It starts with something simple, like, 'Why is this happening?' And escalates to: 'If I can just envision Pablo graduating high school, that will be a good sign. Then I'll be able to fall asleep.'
This is where it gets really tough for me. And I need to put my hand up at this point and tell you that what lies below is heavy material. If you aren't able to go there, stop reading now. If you are OK to read about how the experience with Pablo lines up with past events in my life, read on.
Let me start this section by reminding you (and me!) that the Pablog has one purpose–to document our family's experience on this unexpected journey. The full experience.
Because Jo Ann has a different process than me, the blog has been mostly about my experience, or at least my interpretation of our family experience. She writes when it comes to her. All good. It works for us.
So, some days and weeks in Pablogland have been filled with reports of good, even funny stuff. For the past week, I have not been 'good' or 'funny.' Far from it. Anger has been my constant companion. I know what anger does: it mimics control, something I do not have a lot of at the moment. My anger leads to drama, and drama fills up time that might otherwise be idle, or reserved for inward reflection. But the pain is too great to crave inward reflection. So staying in anger has a double payoff: control and the general anesthesia of drama.
I am human, and will make more mistakes in life than any blog could hold, so I have no problem revealing this to the Pablog world. It's just the truth.
Another truth is that there is no script for this. When I first heard the words 'Pablo' and 'cancer' in the same sentence, I thought I could make it through OK because of my cancer experience with my older brother Scott. I guess I did think that that was my template, my script. He was not just my older brother. He was my idol, my guide in life, a father to me and my little brother Dean. Taught us about music, art, architecture, food, critical thinking, spirituality, everything. Get what I'm describing? Scott nurtured us, period. And the fact that he was our brother, not a parent, made his guidance sort of the ultimate 'Stand By Me' journey through life. Bittersweet, robust, authentic. We were constantly in search of the purest stuff life had to offer. I would give anything to have him sitting next to me right now. Anything except Pablo. Anything except Grady. Anything except Jo Ann.
I would exchange the past four years of Scott being gone from this earth for four years of me being gone.
Jo Ann and Grady have lived this with me. As a family, we have gone through ups and downs based on my deep sadness around the loss of Scott. Pablo has grown up seeing me weep in the middle of Morning Becomes Eclectic (a song reminds me of Scott). And Jo Ann has seen me worry about every dull pain in my body, fearing cancer. I even paid to have a full body MRI five years ago. Since then, I have had this nagging notion that my day was coming. I had no idea it'd be my son and not me.
I have walked around for the past five years thinking that it'd be me who would be diagnosed with cancer. Why did it skip me, and go to my son? Why does my little boy, so sweet and precious and funny and bombastic, have to carry this fucked up genetic mutation? Why is it him who has the port in his chest? Why does he even know what a port is?
Four years ago, Scott was dying. Literally, he was at the end of life. It was his emphatic wish to pass onto the next life in the comfort of his Chicago townhouse. For weeks we nursed him, right there in his living room. The sights, the sounds, the smell. The hospice nurses and doctors. The middle-of-the-night oral Morphine injections. Then, as he got closer and closer, the middle-of-the night hallucinations. Scott's subconscious was unraveling, as it does with humans. One night, he looked at me with lazer eyes. My arms around him, he had no idea who I was, but was sure that I was out to hurt him. "Get away from me," he said.
Finally, after a few weeks of this, we convinced him to retreat to Northwestern Memorial Hospital, just a mile down Michigan Avenue. Isabella, his daughter, was just three at the time. It was impossibly difficult to see her seeing her father die–in the living room. She was scared. And Scott's wife, Susan, could not take it. There was no easy angle in the scenario.
Scott and Susan's dear friend Father Chuck, who'd married them and baptized Isabella, drove us to the hospital. It took us five hours to get him to rise out of his chair. He did not want to go. I half-carried him down the stairs. The other half was him sort of sliding down on his butt. The entire way down, Scott wept in a way I had never heard, and have not heard since. Open-soul weeping. At that moment, I remember thinking, 'Irony is dead for me. Humor is dead for me.' And, for a long time, it was.
As we were pulling out of Scott's neighborhood, he asked Fr. Chuck to make one more loop around the hood. Cruising past his house, Scott asked Fr. Chuck to stop. Sitting in front of the house, Scott gazed at his front step one last time, clearly and squarely, with purpose. "That's where my little girl plays," he said. A beat. Then, "Let's go."
I had to tell you that story. There is no explanation. It just came out of my fingers and I typed. It was burning in the flames of my fear, anger, anxiety. It is related to Pablo, but mostly just in my head. Scott and Pablo are two different people. Pablo's cancer is wildly different from what Scott had. I am not confused about that, or in any way mixing metaphors. All I know is I feel slightly better now.
But when you get hit by a bus a second time, it still hurts like hell. And it does not let up or let go. It makes me want to eat Elmo-Os at 1:30 a.m. It makes me want to eat frozen waffles with Trader Joe's real maple syrup at 4 a.m. (see picture above).
I have been through a lot in my life. Like you. And so I know only one thing: I will endure. WE will endure. Love is real, and healing, and is the stuff that life runs on. You have given me and my entire family more love than we know what to do with.
As the sun rises over Los Angeles this morning, I am tired. And, knowing that by hitting the PUBLISH POST button in a second, I am letting of all the shit that's kept me up tonight. Being tired is nothing compared to what Pablo is going through. And I don't need a port to get the caffeine where it needs to be.
If you have read this far, I thank you. More jokes soon, I promise.