The Longest Journey

Completing the Circle

It hit me this week. It was the little things, the stack of clean clothes I thought about moving into the closet but never did. The To Do list that remained undone. The bathroom scale reminding me I haven’t been to the gym in a week and a half. The empty suitcase that remained by my bedside since returning from Swedish Hospital, and a pile of ideas stuffed into my head that I just haven’t been able to unload. I can’t read anything too long. I can’t concentrate. I noticed it when I stood in my closet staring at my stack of clothes I had not separated into shirts, pants, and shorts; the piles remain unsorted because everything is undone at this point.

I could probably get away with saying I’m tired, but that isn’t it. Depressed? Maybe a touch, but not that either. Like all emotions this one is hard to put a finger on, or explain in words because it is not one thing.

I’m leaving loose ends because I don’t want to go back, I want it over now. I don’t want to watch Dylan dip down again. I don’t want to smell the antiseptic hallways. I don’t want to hear the click of the IV pump as it pushes the chemo into Dylan’s port. I want to jump ahead one month and be done with all of this.

Instead, I will pack the empty suitcase, hopefully for its last trip to the hospital where Howie Myers was born, and Dylan will complete his final round of chemotherapy. We will have come full circle.

Questions will remain after we are done, but life will open up and we will move out of the rounds of chemo and back into the linear world where time is measured by the sun’s rotation and not by the amount of fluid left in a bag.

Last week, when Dylan and I were in Seattle for a doctor’s appointment, Dylan said, “I have finally been able to get the weight of dying off my shoulders.” He went on to say that early in his treatments he would put his hands on his abdomen looking for soft spots like a TSA agent searching for cancer. Each abnormality, each bump, was something he feared. It meant the cancer was winning. He never said anything about this because most of us keep our deepest fears packed tightly inside.

Death is something we really hadn’t really talked much about in the past three months, which probably sounds odd, but I think it is normal to ignore those things we fear. It would be a lie to say that death hasn’t been on my mind through this whole thing but I haven’t talked to Dylan about it much. Talking about it would be bad luck in my mind. I do know there is no scientific evidence proving the discussion of death will make someone more likely to die, but what does science know when it comes to luck?

I told Dylan that death was something I feared much more when I was his age. I had so many things I wanted to do when I was 20, but now that I am moldering like blue cheese I have had the chance to check a lot of boxes on my bucket list. My death isn’t something I spend much time worrying about these days, I have been very lucky.

When I was in high school, I worked in the local cemetery. (The answer to your first question is: “Yes, I did bury people.”) I dug graves. I mowed the grass. I edged around the headstones. I became very good at looking at the date of birth and death and figuring out how old a person was when they died. It didn’t scare me to work there. It was a job. When there were funerals we got to sit in the garage and talk about Van’s instant hot water and Romero’s hot peppers, so I liked funerals. During the summer, we could have three funerals in a day. I learned to cut sod, to sharpen mower blades, and everything was pretty normal until my friend Jeff Hess was killed in a car accident.

Jeff was a huge Larry Bird fan. I hated Larry Bird. My team was the 76ers and each year Larry Bird and the Celtics would knock the 76ers out of the playoffs, except for 1983. In 1983 the 76ers won. I had waited for this moment for a long time and so when I ran into Jeff outside of the high school gym, I gave him a ton of crap about how Larry Bird sucked. I remember the moment because it was the last time I talked to Jeff, a day later he was dead.

I took the day off from work at the cemetery and went to the funeral. When I got to the cemetery I knew the guys I worked with were in the garage talking about Van’s instant hot water and Romero’s hot peppers. I was outside. I stood in the back of the large crowd, but I could still hear Jeff’s mom as she cried out in that deep, distressed, guttural moaning sound reserved for mothers at funerals. After the ceremony the guys probably came out of garage and folded up the chairs, rolled up the Astroturf, lowered Jeff’s casket into the vault, sealed the vault, and piled five feet of damp earth on Jeff’s grave. I spent the day wandering around with friends not really knowing how to act when someone you know dies.

It took about two weeks for headstones to arrive and I was at work on the day Van placed Jeff’s headstone.  Van always made a big production of getting the headstone just right, and because I thought Van was a horse’s ass, I thought all the extra efforts he took to place the headstone were done to bring attention to himself, but now I know that it had to be just right because when things need to be permanent they have to be done perfectly, or as perfectly as possible for this imperfect place. It wasn’t a large headstone, but it had a ceramic photo of Jeff in a baseball uniform centered between his name, birth and death date. There he was frozen in time. He would never age. He would never have a family. He would always be there, on one knee looking at the camera ready for action. I wondered how his parents made the decision to put that photo on the headstone. Did they dig through a pile of photos and pick that one, or were they so consumed with pain that they just picked the closest one on hand?

I still mowed the row where Jeff was buried. I edged around his headstone and life went on. Thirty years passed and I still think of Jeff on that headstone when I think about how death became real to me, when it wasn’t just something that happened to old people. These days, I wonder how worn and washed out his headstone is.

About ten years ago, Dylan and I stood in a long hallway of Roman sculptures in the Louvre. I bent down and whispered in his ear, “At one time these people were the most important and powerful people in the world, and now, I don’t know who any of them are.” I don’t know if he remembers the moment, most of what the kids remember of our trip to Europe relates to me making them walk too much and telling them we wouldn’t be buying that, but I remember the moment because in that moment I remembered all the headstones I passed by each day as I mowed the grass at the cemetery. After awhile people stop coming to visit the headstones at the cemetery, no matter how grandiose the headstone is, or how important the person was. (Jim Morrison and Oscar Wilde might be exceptions. I’d toss in Victor Noir as my favorite.)

Dylan and Oscar Wilde. I take my kids to all the cool places.

Dylan and Oscar Wilde. I take my kids to all the cool places.

People who die drift away from us, it is the only way for us to continue living, but the names of the dead are the ghosts that live on in our heads. My head holds the names of the people I have known and when I die those names will go with me. There are some ghosts who haunt me more than others, the ghosts of the young lives cut short: Jeff Hess, William Schwab, John Gibson, Jerome Green, Lance Osborne…

Almost three months ago, I started writing about this long journey in hopes of keeping Dylan alive. I can admit this now. I wanted a record for Dylan to read later in his life, but I didn’t know if he was going to be there to read it. I didn’t know if we would make it to the final round, but today we will leave home and go to the 12th floor at Swedish hospital.

He is strong. He is ready and he has been kicking some cancer ass. Let’s ring the bell to signal the end of chemotherapy and complete the circle.

Dylan with some unknown Romans.

Dylan with some unknown Romans.

27 replies »

  1. This is my favorite post of yours I’ve read, since all this started and ironically I started following you, in January. Beautiful writing that elevates me above my computer, out of my room, and many places looking over the earth. Beautiful, Jon.


  2. Get back to that hospital and finish the job. And . . . if you can keep this kind of writing up for an entire novel, please get that novel out ASAP. And . . . I used to be a big 76ers fan too. Loved Dr. J., Mo Cheeks, Bobby Jones, etc. Hated everything Celtic. Don’t watch NBA anymore. One of those “You can never go home again” things, I guess.


  3. Such a beautiful post. I adore your sweet family and am so glad it’s the final round. Side note: I love when you write about taking Dyl and Em to Europe when they were young! Those stories always make me laugh! Hugs to you and your amazing family! xo


  4. Hello Jon, this is Geri’s friend Phyllis. Your “words, words, words” have touched me — thank you. And, yes! A “virtual bell” is being rung from New Hampshire at this hour (7:50 a.m. EDT).
    Today’s “words” found many tender places in my memories of … my high-school friend who died of a different type of lymphoma after many bone-marrrow transplants (she was 51), my niece who died at age 40 of a cerebral aneurysm, my dad and then my mother. And now, as a 77 year old, we hold our breaths when the phone rings or the emails say “sad news” on the subject line.
    For all that, the “words” you have shared from Dylan’s and your family’s experiences have offered hope, inspiration, joy in this troubled world. Thank you so very much. Phyllis Schultz (Geri’s “big sister” at Jamestown College … 1957).


    • Thank you, Phyllis. I just read you note to my mom as we sat in the car waiting for the ferry to take Dylan to Seattle. She has some very fond memories of you and Jamestown. One of Dylan’s nurses is from ND and her sister went to Jamestown also. The world is shrinking and our connectedness is ever more apparent.


  5. I completely understand that method of not quite depressed but just wading through life..all I can say is I feel you. It’s not an easy life. Exactly how you said you started writing to have something. My guy encouraged me to start journaling when he was diagnosised, not to document his illness but as therapy. I’m so glad I did, going through it intially was tough but there are so many things that make my heart well up with love and that’s the things that nobody, no cancer, nothing can take those memories away. It’s easy to get downtrodden sometimes but always keep the faith. Nothing is over until it’s over and even then it’s not over! Much love sent to Dylan and your family. Thank you for sharing your story.❤️💕☀️


  6. I’m looking forward to the bell ringing post. Having grown up in Boston, (when the Patriots sucked ass Boston) your hatred of Larry Bird…well, it just makes me sad, Jon ;-). Near where I grew up there a cemetery which had a lot of headstones like the one you described, often kids. Those things scared me more than the crypt with the handprint, the one that if your hand fit the door would slide open–. Beautiful post, Jon. I’m looking forward to the end of this story. And the beginning of Dylan’s.


    • The good news is that I now appreciated those Celtics, they played beautiful ball…I really began to love Bird as his body failed him and he continued to play hard.

      I am also looking forward to the bell ringing, it will be a good end to this journey.


  7. Jon. Another well written account of life, especially the private one that is trapped in one’s own mind. Still have been thinking of Dylan, you, and the family. I too rooted for those Sixers 🙂


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