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August 12, 2005

When I find myself in times of trouble, Stephen Jay Gould comes to me

Another great walk this morning with my pal Zeke, who is taking all this far better than I am. As people often do when confronted with bad news, I turned my mind to scripture as we walked, to see if there was some solace or, barring that, wisdom to be found.

And it can work if you pick the right scripture. The one I picked this morning was paleontologist Stephen Jay Gould's essay The Median Isn't the Message. Faced in 1982 with a diagnosis of mesothelioma, a cancer associated with exposure to asbestos, Gould went to the medical library to read up on his condition. He read that his cancer was incurable, with a median mortality of eight months after diagnosis. After a bit of thought, Gould was elated at the good news in those statistics.

Degenerative myelopathy, the incurable neuromuscular disease that has been suggested as a likely cause of the growing weakness in Zeke's hindquarters, is a devastating and incurable illness that is, apparently, uniformly terminal. And incurable. Did I mention incurable?

The typical progression of the disease without treatment is diagnosis, then paralysis of the rear legs within three to six months, then at some point shortly thereafter a similar degeneration of the front leg muscles, with subsequent deterioration of the brain culminating in death. Treatment can significantlysomewhat extend the dog's lifespan.

Once I'd thought about this for a while, I felt a slow relief spread through me. Joy followed.

Averages are tricky things, as Gould pointed out in the essay linked above. This is especially so when you're reading medical information that hasn't been (ahem) vetted through peer review. The "average dog" with DM lives for a year after the onset of muscle weakness, but what kind of average are we talking about here? More than likely, we're talking a median, in which half the dogs studied died before a year had passed, and half after.

It's possible, given the rarity of the disease and the informality of the sources, that we're talking about a "mode" average. A mode is different from a median. Let's say you, Bill Gates, and three Somali gradeschoolers are put in a room and asked to show how much cash you have in your pockets. Two of the kids have nothing, one has one cent. You have forty bucks, and Gates, embarrassed, confesses that he left the house in a hurry and only has what's left over from his dinner tab last night: 800 dollars. You have a cumulative $840.02. Most people would compute the room's average cash on hand at $168.00, by taking the total and dividing by the five people present. That's an arithmetic mean. Arithmetic means are useful for figuring out how much each person on a road trip should put in for gasoline, and for not much else. They are seldom used in science.

The median is the amount greater than or equal to half the values in the range, so the median cash on hand in the room would be one cent. The mode is the most frequent value: the mode in the room is zero.

Whether it's a median or (far less likely) a mode, that devastatingly swift average progression of the disease is good news for Zeke. Medians are generally used because natural phenomena, when reduced to numbers, display a wide range of variation. That "average dog with DM" in fact represents a lot of dogs, some living longer than two years, some dying tragically quickly. The short end of the scale has an obvious limit, at zero: no dog will die of the disease before it starts to exhibit symptoms. On the other hand, it is conceivable that some dog with DM might live a rather long time with the disease.

Thus the mortality graph of DM is what is known in the stats biz as a skewed distribution, with a wall at the zero end, a bell curve or plateau between six and eighteen months, and a long tail that stretches out conceivably to the limit of normal canine life expectancy. Half the dogs with DM will die before the median. But half will live past it.

Zeke has been scraping his back toenails while walking - one of the field marks of DM onset - for two years now. We noticed weakness in his hind legs almost a year ago. It has not gotten significantly worse since then. It has, in fact, gotten better for months at a time. According to what I've read, Zeke has already secured himself a spot well out on that long tail. So far, in fact, that I am wondering whether his ailment is DM at all. If it is, Zeke has already beaten the odds.

And so did Gould, who beat his mesothelioma and lived for twenty years past that day in the library, at last dying of an unrelated lung cancer. A fan, I was greatly saddened at the news of his passing, a feeling that wells up again as I write this. Because I wish I could tell him how much that essay has helped me, and not for the first time. There is solace to be found in a good book.

Thank god I turned my mind to Gould's writing this morning. I could have wasted my time praying.

Posted by Chris Clarke at August 12, 2005 09:22 AM TrackBack URL for this entry:
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Comments

Anyone looking for the article complete with graphs and additional information will also find it in Gould's 1996 book "Full House". Updated and expanded from the original essay, "The Median isn't the Message" is included in Part Two of the book under the title "Case One, A Personal Story". That one essay is worth the price of the book.

Posted by: OGeorge at August 12, 2005 10:35 AM
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Amazing as always, Chris.

Posted by: Stephanie at August 12, 2005 11:40 AM
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Prayer isn't always a waste, unless you're praying for God to make an exception just for you. That mostly tends to yield expectation, then anger and frustration.

But I believe that it was prayer that led me to the very same Gould essay you're citing, when my sister's lung cancer recurred. Now, that prayer wasn't a waste at all, this was news I could use.

God's a sneaky ole bugger sometimes, Chris.

(By the way, you might enjoy knowing that I once sent an email to my pastor, suggesting a topic for a sermon: Intercessory Prayer: Futile, Or Just a Waste Of Time?)

Posted by: Vicki at August 12, 2005 12:17 PM
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I'm sorry to hear about Zeke but it sounds like you have a grip on the situation. Thanks for the post. I learned a lot. :)

Posted by: Lei at August 12, 2005 05:51 PM
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Reading your posts about Zeke reminds me so much of the last year of my old collie Meg's life. She was a very fit and healthy dog up until her 16th year and then one thing after another went wrong - increasing doggy dementia, arthritis, and finally cancer. When the cancer hit her at 17, we made the decision to have her put to sleep because there was no way we would let her endure cancer treatments at her age. That was years ago but there's still a Meg-shaped hole in my life and there always will be.

Posted by: Sara at August 12, 2005 11:41 PM
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:(

Posted by: craig at August 13, 2005 05:38 PM
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(o)

Zeke's a good dog. I hope you get to have as much time with him as the averages allow.

Posted by: Rana at August 14, 2005 03:50 PM
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A couple of things: 1) Zeke is beautiful; you are lucky to know him. 2) I have turned frequently to that SJG piece you mention; I have often found, though, that recommending it to those who are chronically or terminally ill is kind of dicey (same with S. Sontag's 'Illness as Metaphor'). It's baffling to me that something that gives me such comfort can be so threatening. It's as if they want to be told that their cancer or their dog's leukemia is their fault (e.g. for being too angry or passively hostile or having "negative energy" in their lives) and that they can beat the disease with prayer or by saying the right affirmations or going to the right number of 12-step meetings or something.

Posted by: alphabitch at August 15, 2005 07:20 AM
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Hey, cool; thanks. I know all about statistics. I've been living with a prognosis of death within five years for 26 years now (though I only knew about it for the last 16...hmmm...that skews it all even further...if you'd have a statistically-based prognosis if you knew you were sick but you don't actually know you're sick, do you still have a prognosis?).

Anyway, just for support, just to add my two rusty cents' worth of validation, I'll repeat something you already know. Fourteen is old for a large dog, though some live longer, and yet no matter how long Zeke lives well and happily with you, it will still not ever be enough. All my pets, even the longest lived who came to me as an adult and stayed 17 years, have left me wanting more. I expect to leave myself before I'm ready. There's always one more thing to do, you know? And always one more thing to share, one more dawn, one more rain with mudpuddles, one more outing somewhere new, one more cozy night in.

So do what you're doing. Don't count the days. Just have them and use them, all the way up, each one, together. You still won't have enough, but you will get full value.

Posted by: Sara at August 16, 2005 11:59 AM
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Hey, sorry I'm late chiming in. Zeke strikes me as one who will always beat the odds. He picked you for a human, didn't he?

Good luck with whatever lies ahead.

Posted by: KathyF at August 16, 2005 11:53 PM
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I was feeling low today and remembered a line from the Beatles song that was played at my mother's funeral almost 33 years ago this month. I typed it into the address box and came upon your site. I guess it inspired me to think that no matter what is said, no matter what the statistical data reveals - everything is still in God's hands - and if we put ourselves in His hands it doesn't matter what anyone else says. I suppose that is how miracles happen. Someone believes in God and trusts Him so much that things happen that would not ordinarily happen. Perhaps it is like when we love someone so much that we want to make their wildest fantasy, their heart's desire come true - we can't do it all the time - but just once maybe we can focus all our energy, creativity, and self into making that dream come true. Maybe God loves us so much that He fulfills our heart's desire every now and then.

Posted by: Pamela at September 1, 2005 04:50 PM
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