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The Myth of the Toy Story

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All of Pixar’s Toy Story movies capture the same narrative that many of my kids’ books tell. It’s a story told and retold again and again in children’s literature–and I bet that if I was more of a student I could find evidence that it’s told in other genre’s and realms of literature as well.

Here’s the theme: who care’s about Mr. Potato Head? Who cares about Slinky? It’s all about Woody. It’s all about the important doll or toy that has lost his position of prominence. Who cares about the fact that Woody has been dominating the toy pyramid for years, that Mr. Potato Head has never had a prominent place in the hierarchy of Andy’s love–the fact of the matter is that we absolutely do not want Woody to lose HIS place. When Woody loses HIS place we all grieve and seek proper restitution. It’s all about getting the top toy/doll back into it’s place of prominence. Only then do we feel like the story has its proper ending.

Right?

I could list you title after title of children’s books that tell this same story. We hate when loss is experienced…even if it is loss that does nothing more than allow that character to experience what virtually every single other character in the narrative is, has, and will experience. Everyone else knows what it feels like to be kicked off the bed. All the other toys get it…and we don’t care. We only care that the dominate toy is now experiencing pain in a new way…and we grieve with him/her through their pain. No body was grieiving the fact that the Slinky dog wasn’t on Andy’s bed at the end of the day. Nope. We grieve Woody’s loss. Slinky had so little to lose…so who really cares right?

What is this phenomenon? Is it that we don’t like watching people experience loss? Is it that we’re simply uncomfortable with it, with the grief and pain it brings? Is there truth to the idea that we don’t like the implications it might have for ourselves–that those of us with control or power in our world fear losing it? Because what intrigues me most is that this is a storyline that in many areas we adamantly stand up against. We tend to love the traditional Disney storyline of a down-and-out sports team that overcomes all obstacles and becomes a winner. We love underdogs, we love rags to riches stories, we love that narrative because it gives us hope. Right?

But, strangely, I’m realizing (and attempting to articulate) that we also love this alternative narrative that itches that spot in the middle of our back that we can rarely reach. There’s a secret tickle back there of which we rarely speak of–a tickle that we crave to be itched even if it’s no good for us (clearly my itchy metaphor doesn’t work so well). We love underdogs because we want to be the underdog that overcomes…but more often than not we are NOT the underdog. More often than not we are Woody, we’re the toy with privilege and power who is terrified of losing it. And virtually all of us hate change!

because change always brings loss

and loss always brings some level of pain

and pain reminds us of our brokenness

and brokenness reminds us of our vulnerability

and vulnerability reminds me that I don’t have control

Is this why at church we sing “praise and worship” songs so readily while avoiding songs of grief and lament? Is this why we celebrate the young instead of the old? Is this why we have so little room to talk about brokenness less it cheapen our conversation on health?

Is it because we want to avoid anything that reminds us that we just might not be the underdog–we may, God forbid, be Woody–we may be living in fear of losing the system or structures of power that have long given us the identity that we need desperately desire. And if we lose that…well…if we lose that then we just might have to face a level of pain, discomfort, and change that…God forbid, will bring us face to face with our vulnerability, our brokenness, and the actual truth that we do not have control over our lives as we once thought we did…and that freaks me…no, wait, I mean you out.

Cathing, Control, and Dealing with Disappointment

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There are some pretty awesome things about having a Foley catheter, i.e., about having a bag of my own urine constantly strapped to my leg.

  1. I can pee during virtually any conversation, at any moment, in any context…and you’ll never know…except that for some reason I take great joy in telling people about it (right Dwayne?)
  2. I no longer need to get up five times a night to empty my bladder.
  3. It is keeping me from getting additional UTI’s because it’s keeping my bladder from constantly having urine stuck in it.

In general, however, this is not the next chapter I wanted to tell in my story.

It happened like this: over a period of two weeks my bladder was scanned four times after I attempted to ‘clear’ it. Each time, and progressively worse each time, there was still a significant amount of urine remaining in my bladder meaning that a catheter was a clearly necessary evil. To clarify the story even further, on Friday I went back on steroids in hopes that it would reduce inflammation in my spine that was possibly causing the increasingly poor bladder function. Returning to the ‘roids, then, would keep me from having to go the route of a cath again. But on Monday night, when we went to the ER because of some pretty extreme stomach and chest pain, it turns out that post-urination there was a significant amount of urine still in my bladder (900cc!)…and the worst part was that I felt little to no pressure telling me as such. Not good.

Not only did things not improve when I went back onto the steroids but they got worse! So I got a foley cath put in (one with a bag) and most likely tomorrow (Thursday) at my urology appointment they’ll train me to start self catheterizing three times a day (draining it with a tube that you then pull back out).

Here’s the thing–as much as I’m not looking forward to the pain of self cathing, it’s not the physical pain that I’m grieving most right now. The best word that I can find to describe what I’m feeling right now it is disappointment.

I’m disappointed. Incredibly disappointed. Let me attempt to share why.

I think that unconsciously I had made my battle to get off steroids and to have control over my bladder and bowels something of great significance. In a sense they were my last stand, the last place in my physical body where I could have victory and some semblance of control. (Control is what we often seek especially when it comes to sickness and disease. Cancer makes us feel as though life is out of control and I think it freaks us out in a very very deep place within us both as victims and as onlookers) On Friday I was willing to give up on one of my final battles (going back on ‘roids) under the hope/assumption that it would lead to victory over the other battle (the bladder). In the end I lost both. And in many ways it honestly makes me feel as though I’ve got no other battles to fight.*

Going back onto steroids was disappointing. It means that my body is going to continue to get larger regardless of food intake or exercise. It means that the acne rashes will continue to cover my body, the stretch marks will continue to color my body, the nerves on my tongue and over much of my skin will continue to wig out my body, and my sleep schedule will continue to be affected. Going back to the world of catheterizing is utterly disappointing. It’s a painful process done multiple times a day, it’s a process that takes a long time, that is invasive to a life that already feels painfully shut down regardless of my preference. More than anything it’s something that constantly reminds me of the digression of my body–I’m losing. I’ve done everything I can do, I sacrificed by going back on ‘roids, I ate the right stuff, I drank the water, sipped the juice, I got acupuncture, swallowed the vitamins and herbs, I prayed, I wished victory, I envisioned it, I did all you can do and lost.

I’m disappointed.

The Bible is full of laments. I don’t have the statistics in front of me, but a pretty significant portion of the Bible can be considered a lament of some sort. In fact, there are many points that not only capture the lamentation of the people of God but the lament of God himself. Many of the laments found in the Israeli songbook known as the Psalms end with or include a piece of hopeful poetry. For example in Psalm 5 we read:

Listen to my words, Lord,

consider my lament.

 Hear my cry for help,

my King and my God,

for to you I pray.

(continued later…)

 

Surely, Lord, you bless the righteous;

you surround them with your favor as with a shield.

But there are also a whole pile of lamentations that do not end with ‘good news’ of any kind but end awkwardly in the angst, sorrow, and pain of the lament itself. If you’ve read many of my blogs concerning my family’s journey in fighting cancer you’ll notice that most of them end on a point of hope. That’s just how I tend to view the world: through rose colored glasses…and I think that’s accurate to the story God is crafting in my family’s life. I really do see our story and my potential death as a good news story. But honestly I don’t feel like doing that today. Even though I’ve been lucky to be saved from my own moping around the last couple of days due to an amazing wife and some incredibly fun housemates who have brought me to laughter and who have allowed me to forget I’m sloshing around in my own urine on my leg–I’m still not done grieving this one.

I’m fairly certain that most of my blogs end in an implied ellipsis. Very few, if any, end in any other format. And this blog is no different. I’m sad and I hope that the next few weeks bring about a new chapter to this story. Between two hospital visits, debilitating headaches, some vomiting, surgery, multiple visits to the urologist, chemo treatments, sever dehydration, sever constipation, multiple catheters, a leg that’s not working as well, stomach contractions that won’t stop, lack of sleep, and two UTI’s over the last month I am ready for a different chapter to this story to emerge. This blog demands an ellipsis because any other punctuation would be too painful. There’s no better punctuation to capture pain, frustration, or in this situation: my utter disappointment.

… … …

* Please walk with me through this ‘out loud processing’. I realize that it’s less about these battles and more about the ‘war’, that it’s more about beating cancer as a whole. I realize that, as I’ve clarified many times over, control is only an illusion. AND SO as I think through this out loud with you please do not get hung up on the process itself and instead know that I’m sharing a journey. I’m not attempting to capture a ‘right and true’ way to see sickness and control. Nope. I’m processing through how this makes me feel, what questions I’m being invited to ask, and what losses I’m being invited to grieve. Don’t get lost in the journey ok?!

The Baddest Video of ’em All

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This stuff is just too funny to not pass on to the general public.

First off, somehow my wife stumbled across this stunning website that was created by a 39 year old artist. There are no explanations–in fact there really are no words to capture how…how… intriguing this blog is.

Secondly, and more importantly, these videos are absolutely amazing…


Video: Conspiracy of Love

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As I attempted to say in my last post (though I was clearly not able to find adequate words to capture it), a collection of beautiful people came together in the last month to paint a neighborhood mural. While the mural was partially in honor of our family, it was more accurately done to bless the entire community. The intent, as I am told, was to give something to both the community and to our family–or better said, it was by giving to the community that these people felt they could most effectively give to us. Our friend who headed up the project said that her intent was for it to partially capture an end result of our work, passions, and dreams. It was the action of all the neighbors coming together creatively that was actually the gift to Jess and I while it was the end result art piece (the mural) that was the actual gift to the community. I think she’s right.

One of of the subversive participants in this project put together this video of the murals creation. It makes me jealous that I missed out on the fun of secretively painting together with friends…so I kind of hate this video…but I guess it’s still worth watching (please know I’m joking)…

Affirming the Awkwardness

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Much of what Jessica and I have been invited to live into with regard to cancer and community is the task of affirming the awkwardness that necessarily exists between us and you.

Huh? Am I calling you awkward?

Well, yes, kind of. And no, not really. The whole thing, to be honest, is hopelessly awkward.

When you stop me and you say “Ryan, how are you?” we both realize that this is an awkward question without a good response. ‘Cause we both know part of the answer, “How am I? Oh, I’m just dying of cancer, that’s all. How are you?” or I could just go the polite route, “I’m great. How are you?” which leaves both of us fully aware that we just had an incredibly superficial dialog that was wholly useless. How am I? What you’re really wanting to say is “Ryan, I care for you. I want you to know that I care for you but I’m not quite sure what to say or how to say it.” but saying that would be equally awkward now wouldn’t it?!

And so we rest in the awkwardness of there being very little to say–very few appropriate things to say for such a time as this. Good MRI reports often make it easier, it gives us positive content to focus on. “I heard about your good results! Congratulations!” or, in other words, “Hey, I’m so glad we’ve got something to talk about that feels more socially appropriate than death!” and you’re right. Death is awkward to talk about in a quick casual conversation.

Sometimes I like to enter death into the conversation way before it’s socially appropriate. Sorry. Sometimes it’s just funny. Sometimes it cuts the tension in such a way that I just can’t pass it up. Sometimes I seriously simply forget what’s normal.

What is normal though?