The Longest Journey

Let’s Talk About Guilt

The weather in Seattle for the past two days? Clear skies, close to 60 degrees, the days are starting earlier and ending later, spring is in the air. This is not normal and for two days I have had the chance to get out of the hospital and walk around in the sunshine. I have eaten well, wandered around my favorite Seattle bookstore, and enjoyed being in the center of one of my favorite Seattle neighborhoods. During these two days Dylan has had a headache that has ranged between a 4-8 on the “rank your pain between 1-10” game he gets to play with the nurses each day. He has tried a variety of pain meds, but nothing seems to hit the spot. He’s tried laying flat, sitting upright, sitting in a chair, walking, and anything else that might shift his pain level down a few places, but nothing has worked. This morning at his daily weigh in he came in at 194, 33 pounds in four days, that can’t be good. He is eating, but he has dark circles under his eyes and his face has a lean skeletal look. He joked this morning that he is going to start a weight loss website with before and after pictures, “You too can lose this much weight, you just have to get cancer.”

The past two nights I have slept without waking up every hour to guide Dylan to the bathroom, he is still getting up to go every hour, but now he doesn’t need any assistance. How do I feel about all of this? Guilty. The guilt hit me hardest yesterday after Dylan said he wanted me to turn off the lights, turn on his iPod, and leave for two hours. He wanted to sleep and in order for that to happen I needed to leave. It was near dinner time, so I figured I would slip out and visit my favorite establishment a few blocks away: Rhine Haus (previously known as Von Trapps). Rhine Haus is a German beer hall with brats, kraut, and indoor bocce ball courts. I turned all the room lights off, massaged Dylan’s feet for a little bit, and then walked the two blocks to Rhine Haus which was closed for an employee party. I moved to plan B, which meant walking another two blocks in the sunshine to Elysian’s pub. (Elysian is a microbrewery that was recently purchased by Budweiser.) It is the type of pub where a beard like mine looks pretty normal. I got the worst seat in the house, behind a wooden pillar at the bar and ordered a beer, hot wings and poutine.

The Happy Hour crew was an odd collection of solo males, guys with nothing better to do on a sunny day in Seattle except save two dollars on a beer. One guy, sitting a few dudes away from me caught my attention and as I got closer and closer to finishing my beer I thought about leaning over and asking, “Are you really reading that book?” He had Italio Calvino’s novel Invisible Cities sitting next to his beer. I have read a few of Calvino’s works and they are mind blowing and frustrating. They are also the type of novel someone might pretend to read if they wanted to look like a smarty pants. This guy also had a journal type notebook which he was writing in and from where I was sitting looked like a collection of writing and doodles. I mind my own business most of the time, but this guy was really pushing his luck. Then he started to do something even more strange, he started using his Sarah Palin notebook (his hand) to jot down a few things. That was the tipping point, if you have a notepad with real paper, why are you writing on your hand? To draw attention to yourself. Yep, anyone who is a pretend writer (like me) knows that going someplace public and writing is self-indulgent. The real hope is that a famous literary agent walks by and sees you hard at work and asks, “Are you writing the next great American novel?” I’m sure this happens all the time at the Elysian pub in Seattle, but writing on your hand is for amateurs. Real pretend writers write on scraps of paper, or they have EverNote on their iPhones like me. I didn’t take the bait, I wasn’t going to ask this knucklehead about Calvino. I wasn’t going to ask, “Whatcha writin’ on yer hand there big fella?” I wasn’t going to talk to him at all. Instead I got out my iPhone and made a note about pretend writers into my EverNote app and then I paid my bill and left.

When I got back to the hospital Dylan was still not sleeping and uncomfortable. He wanted to listen to Schubert’s Rosamundi Overture while I massaged his temples and feet. He closed his eyes and relaxed. I thought he was sleeping, but he wasn’t. I read the Wilfred Owen poem Anthem for Doomed Youth and Frost’s Nothing Gold Can Stay, and we talked a little bit about our feelings of optimism and staying gold. These conversations would never have happened without cancer. If death had not peeked into our lives and ripped away everything distracting and unimportant these moments would not have happened. We tried on last time to bring on sleep.

What does a dad think about while massaging his 20 year-old son’s forehead and feet? About guilt. About being nearly 50 and never facing death in a real way. About enjoying a beer while your son is suffering. About beautiful days and their cruelty.

15 replies »

  1. Here’s a conversation I had with my son this a.m. after he told me he got an 83 on a macro-economics test:
    “That’s great! Do you like economics?”
    “Not really.”
    “Is there any course you like? Anything you’re passionate about?”
    “Not really.”
    The end.

  2. Will the docs allow marijuana infused cream? My friend who went through cancer used to get bad headaches and swore by the cream. Praying for you guys.

  3. Jon, thank you so much for sharing with us what you and Dylan, Cheryl and Emma are experiencing along this difficult journey. We got the e-mail today that let us know you were writing about this. I am so touched by what you have written and have shed so many tears this afternoon (plus a few inner smiles at your view of things absurd) that I feel like many of us are there with you, sitting in the hospital room, cheering Dylan on. Your whole family has been in my thoughts and prayers since I heard the news about Dylan. A couple of days ago, I was thinking about how good it would be for Dylan to see Gabe. I was so happy to read that he has been able to come over a couple of times to visit. I’m sure that did them both a world of good. There’s nothing like having your buddies come by to lift your spirits. It helps take some of the burden off. You all continue to be in my prayers.
    Jaye

  4. OMG Jon love that part about ‘smarty pants’ and ‘pretend writer’; so flippin funny. And by the way there are at least 3 writers in your house; You, Dylan and Emma. I’m sure Cheryl is too but I haven’t had the luxury of seeing her writing. Maybe soon one day.:) I love that your there to massage his forehead and feet. That is so awesome. Does Dylan get to have a beer on the ward??? I wonder if that would help or harm. hmmmmmmmmmmmmmm… it sure sounds good. Can’t wait to hear when he gets to come home as i’m sure he can’t wait either. I sure loved his blog too. Shoot you and Cheryl have some pretty talented Writers under your roof. Love and Prayers to you all!!!!!!!!!!!!!! Can’t wait to watch him walk across that stage the Cheryl had spoken to you about. I def want to be there. Love Auntie anita

  5. Jon…We met at your parent’s home and discussed the writing life. How mundane that chatter seems now as I join my positive thoughts with the loving energy of our universe to add to the strength of your wonderful family and the healing of a young life.

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