The small c

So, I've been meaning to explain the title of the blog. I have a massive amount of work to do right now and very limited time in which to do it, so what better time than now to push all that to the side and think about more important things? And why not think about cancer?

Most of you know about the recent Showtime series "The Big C." It's about a suburban mom and wife who is diagnosed with cancer. I can't really tell you more than that because I've only seen one episode and lost interest (let's just say it lacks in subtlety). Anyway, the title of the show had already become a popular way of referring to cancer diagnoses. "Cancer" is too frightening and disturbing a word; it's come to signify a slow, painful death. And so we refer to it by its initial letter, and underscore its dreadful importance by qualifying it as "big."

So, yeah, our son has the "Big C." In those first weeks after the diagnosis and surgery, we refused to use the word "cancer." Hell, we refused to even think about the word. I remember the first day we were visited by a nurse from the oncology ward. She told us the ward she was from then paused and asked if it was ok for her to visit with us. She knew her presence signified a new reality and a new life for us. She new that she was a representative of one of the worst fears a parent could have. We of course asked her to stay.

I had to leave shortly after she arrived (I don't remember exactly why) but I remember talking with SW later about the visit. She told me the nurse was nice and they had a good talk. But something really troubled SW. The nurse had mentioned SB's "cancer." SW told her, "Well, we don't know that it's cancer yet." The nurse, SW said, smiled and then continued on with the conversation. We were indeed waiting on the pathology report to find out what kind of cancer SB had, but we were still not ready to believe that he actually had the "Big C."

When the head of oncology came by later, he took a very gentle approach with us, saying that if the pathology report comes back with a normal pilocytic astrocytoma (btw, it didn't) then one of the options would be to just wait and see. No chemo, no surgery, just wait and see. I think that this subconsciously reinforced the illusion that we were not dealing with cancer. Throughout that first week we talked about tumors, pilocytic astrocytomas, chemotherapy, oncology centers, but we did not ever utter the word "cancer."

Early in the second week, after another oncology nurse had mentioned cancer to SW, we talked about it together. This might sound funny, but it was over a week after diagnosis and surgery that we had a discussion about "cancer." When we finally spoke those words, it felt like we were speaking of death. If felt as if we were uttering some black magic, and we'd best keep our mouths shut. But we also knew that we had to be honest with ourselves so that we could be honest with SB.

"Does SB have cancer? Is that what this is?" SW asked me.

"Yeah, I guess. It's a tumor right?"

"But not all tumors are cancerous."

"Right, but then why are these oncology doctors coming around?"

The funny thing is. The hospital staff seemed just as wary of the word as we were. No one except for these two nurses from oncology ever mentioned the word to us. We had heard every other medical term to describe Max's condition and prognosis, but not "cancer." Perhaps this was because there are much more precise ways to talk about cancer and its treatment. Mitosis, anaplasia, glioma--these terms signified much more for our doctors. But they also allowed the doctors to avoid terms that signified as much to us.

I remember when very soon after our talk SW asked the head of oncology, during one of his several visits with us, if SB's tumor was properly called "cancer." He smiled slightly and awkwardly, and said, "Well, yes." The tone hinted at surprise. He paused for a second and then, as if realizing that we knew but just needed to told, he added, "SB has cancer."

So, what about the blog name? It comes from two sources. The first is a recognition of the peculiar sorrow, strength and joy that attends childhood cancer (and any serious childhood illness). How can something so terrible happen to someone so small and innocent? The "small-c" is a cruel puzzle. The second source is a desire to face "cancer" honestly, but not too honestly. No matter how big and scary it is, we want to shrink it--in every way. So the "small-c" is a way to not just face the facts, but to face down the facts.

Grace, again

We were swept up with love last weekend. If you read this blog, chances are, you were doing some of the sweeping last Sunday at the wonderful, marvelous, Cibo. If you were there then you know how delightful it was: the food, the wine, the music and the outpouring of love for SB. If you weren't there then you should know that it was truly overwhelming. Dozens of people and organizations gave their time and money to pull off an amazing fundraiser. (And a couple outsized souls who really made it happen.) I was asked to speak at the end and I just couldn't. I was able to say "thank you" to the crowd but I couldn't muster anything else. I was choked up with tears.

In fact, there were several times during the event when I began crying. Once, I couldn't stop. I was talking to an old friend of SW's about how amazing the whole event was. She had donated her time and money to the event (btw, to see what she does, go here if you're in Phoenix: Churn), and I was only trying to thank her. Well, I instead broke down and only came around after she offered me chocolate gelato. 

I've already written about disorienting acts of love in terms of "grace." I wrote about how grace is a thoroughly unmodern idea that contradicts most every facet of modern social life. We live in a world of contracts, efficiency, bureaucratic rules and regulations. We easily come to see others and ourselves as data points, customers, and constituencies. In the modern world, we are "forced to become individuals," as one well-known sociologist has said. So much is this the case that we are mostly unaware of how tightly bound to communities--how de-individualized--humans have been for most of our history. 

It's little wonder then that Protestantism, with its intense focus on grace and its individual nature (Amazing grace . . . saved a wretch like me. I once was lost, but now am found, Was blind but now I see) spread like wildfire in the modern world. To me, grace is an idea that makes the most sense, that is most necessary, in the modern world. In a tight-knit pre-modern community, your destiny, life-chances, success and failures, are completely bound up with your community's destiny, life-chances, success and failure. What would unconditional love mean in a community like this? It would be worthless because your recognition, acceptance and care in that community would never come into question. (Of course, hardly anything else would come into question--and this is part of the modern trade-off.) In any case, unconditional love only makes sense when love is a scarce resource.

We give up a lot to live in the modern world, but obviously we think it's worth it. However, some of the things we give up are impossible to replace through substitution. The unconditional social love and care of an unreflective and organic community is something we moderns simply can't generate, at least not for long. All in all, that's ok. There's a lot that comes with these bonds that we find suffocating. But in those moments when we taste what we've been missing, when we are swept up in love and care by others into something that transcends our isolated individuality, the modern trade-off begins to look a like a bad deal.

And so an idea such as grace strikes us as sublime and transcendent. It strikes directly at what we have lost in the modern world and can't get back. But then, in moments like last Sunday, we see that it's still here with us, waiting, ready, and willing.