Living and Dying with Jon

18 Feb, 2013

I sat today where many people don’t get to sit.

My friend Debbie is in that difficult cancer stage called waiting. With cancer you wait to see the Dr., wait to get tests, wait for the test results, wait to hear in simple English what the results mean, wait for a diagnosis, wait for treatment, wait for medicine to kick in, wait for side effects, wait for results, wait to see the Dr., wait to get tests, etc. Today was a test day. The oncology board doesn’t want to recommend treatment until they know the full extent of any cancer spreading.

Being Debbie’s “brother” gets me into areas reserved for family, and even though I am carrying a big camera, Debbie’s instance that her medical journey is journaled with photos gets me into medically sensitive places with her gentle and sweetly-stubborn requests.

Today she was injected with foreign, nuclear substances that made her cellular structure glow – we just had to wait three hours for it to work through her system before doing the scan. Then she swallowed two soft drinks mixed with other medicines on an empty stomach that helped her liver and lungs show up in details for a CAT scan.

While we waited between scans we were thankful to have a break and leave the hospital to grab a bite of lunch. As we continued to swap stories in our journeys one of my mine came tumbling out in more detail and emotion than what I’ve allowed myself to share to this point. In fact, not only has this experience in Portland last summer stayed fairly buried, but it threw a cloud over the rest of that trip that has held me back from writing about that week at all, save one story.

I’ll write it now as I remember it, and submit it to those who lived it for their adjustments, additions, and permissions. If you are reading past this point the principles in the story have agreed to let me share.

One of my main reasons for traveling to Oregon and Washington was to meet with my friend Jon. Jon and I have a shared past; we both had served as pastors within the Vineyard Community of Churches. We met together at conferences, shared ideas on Facebook and blog posts with each other, and got together for meals and discussions about the nature of Church and discipleship. I was intrigued with the way Jon and his wife Kim lived out their beliefs about community in the way they planted, established, grew, and then later let go of their church, and I think they were intrigued by the way Jamie and I were living outside the shell of organized religion.

But my reason for meeting Jon on this trip was not about our expressions of faith, it was about his expression of freedom. Jon had already been diagnosed with cancer and had half of his left leg amputated the first time we got together to have a picnic in a Vancouver, WA park almost eight years ago. He never tried to hide it with his pants leg, and I’d be hard pressed to think of how many times I saw Jon wearing anything other than shorts.

jon_nethers2When I started blogging about The Fine Art of Nakedness and began sharing stories about people journeys with their scars, Jon contacted me. “I don’t have a scar, per se, but does a missing leg count?”

Of course I told him it does and he gave me a summary of his story with his prosthetic leg.

“You know that I usually wear shorts and that my artificial leg doesn’t have skins on it so it definitely gets people looking in my direction. When I see a child staring at it, like when I am shopping at Costco, I look for a place to sit down. I’ll take it off and show them how it attaches to my stump. I ask them if they’d like to touch it and see how it moves. By the time that we are done they are no longer staring at me as being ‘different’ but walking away knowledgeable about prosthetic legs. The next time they see a person with one instead of staring they might run up to them and say, ‘Hey, I know how your leg works!’ And usually, though at first these kids’ parents are horrified that I’ve seen their children staring at me, by the time we are done with our interaction they are thanking me for taking the time with their children and showing them a different side of life than what was normal for them.”

This is a great story, and I decided I wanted more than one paragraph to share the whole tale. I wanted to interview Jon and ask him how he developed this attitude instead of self-pity. I wanted more quotes, examples, and photos so I decided to plan a trip to Portland so I could document the story for my blog. Jon and Kim agreed not only to meet, but to spend a whole evening together, including a meal.

Here is where the telling gets tough and my Happily Ever After blog post fails.

As much as we desire, pray and need our scar stories to turn out positive, they don’t always do so. When I met Jon coming out of his elevator I knew he was coming from his doctor, and I knew that he was sick from his medication. It still didn’t prepare me for his answer to “Jon! How are you?

“I’m dying, Chad. My doctor just told me I had six months to live.”

The next 45 minutes are a bit of a blur to me. I went to capture a story of Jon’s life and he was telling me it was ending. We made it to his apartment and he abruptly threw up into a Corning Ware pan. Kim went and washed it so it was ready again.

He sat down and took off his leg. I couldn’t bring myself to get out my camera. Maybe that was being sensitive and maybe it was me being a coward. I’ve thought of myself as a good medical war zone correspondent, but I froze that night. I didn’t want any images.

I also realized I was present during a sacred moment. Jon and Kim hadn’t even had time to call their boys and share the news with them. I pulled my digital recorder out of pocket, showed it to Jon and pushed record. I wondered what my dying friend would say. I didn’t want to misquote him later.

I tried listening to it this evening for the first time since our meeting and I guess I’m just not ready yet. I had to turn it off.

That doesn’t mean that I don’t remember what he said. I don’t think I can forget. He and Kim both shared how this was actually an answer to prayer, not necessarily in the direction they were hoping for, but both of them needed closure, and had prayed specifically for it the day before.

Jon told me about his cancer, what it was attacking, how they were treating it, and what the side effects of the medications were. As a kid I had always thought being constipated was a funny thing. It was bathroom humor. Without shame Jon explained to me that the lowest he ever felt, the day that he considered taking his life, was when he was in such excruciating pain from being constipated. I had no idea… I still don’t know how that feels, but I’ll never make fun of someone for that reason again. You wouldn’t either if you saw Jon’s eyes. I just wanted to tell him I was sorry.

Jon told me that he needed to figure out how he would spend six months. This was June 20th, so if he stretched it he could see Christmas, maybe even the beginnings of 2013. He told me how he had always wanted to take a family vacation and cruise the European rivers with his boys and their families and that now he was ready to purchase tickets.

He even shared with me his thoughts on the importance of organized religion, which he no longer had any personal use for, and yet the overwhelming need for community during his last days, which he was grateful to have.

I suggested, carefully, that I could make a return trip to Portland. I asked Jon if he wanted to leave some messages that we could video and could be given to the desired participants. I started to explain that my still cameras also shot professional quality video, but then I stammered and said, “but then again I am sure you have a lot of friends with video cameras who would do this for you…

He stopped me, “Yes, but none of them have asked.

It seemed a good segue to leave. I could tell Jon was tired; I had an invite to come back; we would have more stories to share, they just wouldn’t be about his leg.

I finished the rest of my scheduled meetings that week, but there was a cloud over the trip that was hard for me to ignore. I called Jon after I’d been home about 10 days. He told me he felt much stronger, and that since he had outlived every other statistic his doctors had given him that he wasn’t going to accept their six month expiration date. We discussed when I’d come back to Portland but since he sounded stronger and I had a family vacation planned for Catalina at the end of July we would connect again in August.

They gave Jon six months. He lasted six weeks. I received the message as our boat was leaving the San Pedro pier towards Catalina that Jon was gone.

***

I have felt guilty. I have listened to the creepy messages of shame tell me that I let Jon down. I know they aren’t true but they feel so real. The old adage, “The road to hell is paved with good intentions,” is a proverb (originating by Saint Bernard of Clairvaux), that I take issue with. A truer saying might be, “It feels like hell when you lose the opportunity to fully express the good birthed in your heart.”

We ran out of time.

There isn’t fault, blame, or shame. It just didn’t happen. I would have loved to have given Jon the gift of video-taped messages to give to his family, but we weren’t in control.

Jon would have loved to have gone on the river cruise he planned with his family; instead they left the week after he died.

***

jon-nethersI have given a portion of my life to helping people share their stories. One of the reasons so many of the Breast Cancer Survivors have stepped forward to share theirs is to give hope for those who will walk down a similar journey. Cancer can be such a difficult path that they want these new survivors to know that they aren’t alone, that they can make it, and that there is life after cancer. All of these messages are so important and very encouraging.

And then there is Jon. Jon was a survivor. He was a warrior. He did live a life of incredible bravery and freedom during and between his bouts with cancer. Just because Jon isn’t alive today doesn’t make his story any less meaningful and inspirational to me. Like I mentioned earlier, he way out-lived his original diagnosis.

My heart is stirred by those who have been given the same message that Jon shared with me from within the elevator. I have other friends who are literally fighting for their lives right now. Their names are on my lips with each prayer and meditation that I make. I don’t want to hold back when it comes to capturing their life and their stories just because it will hurt when they are someday gone.

It does hurt.

While Jon and I didn’t get to collaborate together one more time to capture his heart and thoughts in video, those that were close to him know his voice well enough to consider what it was he would have shared. It echoes in the memories of how he and Kim lived.

It’s even visible in the way Kim is living each day now when so much of her life is now different without her husband. Cancer may have taken Jon’s leg, but for Kim it amputated a whole lot more.

Maybe my follow up journey to Portland will be to capture more of her journey.

***

It is now two days after Debbie’s scans. I sat next to her and her husband as her doctor entered into the room without introduction. “All the scans are good!” Debbie’s liver, lungs and bones are clear. The cancer hasn’t spread. It is the best case scenario for now.

We breathe a collective sigh of relief and the concern lines on her forehead fade away. She asks if I am available to come back with her and her husband on the day that she starts her radiation therapy in a few weeks. She wants to document as much as she can with photos through this journey. I am happy to tell her I will be there.

We go to leave the hospital. I glance over at the elevator. We choose to take the stairs.

Pinging is currently not allowedOne Response

  1. leah santarone says:

    Oh Chad, I am sorry for the loss of your friend before you got to finish your and his journey. I hate those….lost opportunities to express the good in our hearts…Nothing hurts like that. I am however, so grateful for the range of emotions I am allowed to feel on this journey. This sorrow experienced will make the reunion with Jon so so much sweeter! Thank you for being who you are and sharing what you share.

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