Friday, 31 October 2014

Numbers Don't Lie, People Do

I've said it before and I will say it again; I am a science and numbers kind of guy. I love the way that mathematics and the scientific method have helped explain so much of our world and life around it. Of course there are questions that may never be answered mathematically; that's why we still have plenty of philosophers and religions.

It is the power of numbers that helps us understand things about ourselves. We, as human beings, are a part of a large number set, a pool of data that can help us understand our lives, taking the apparent randomness of so many things and giving them an explanation. Unfortunately that also means that we are a statistic for others; our humanity is not defined by the numbers, just explained.

On the other hand, I hate numbers. It is this statistical analysis of life which tells me that a normal life expectancy for a Canadian male at age 60 is 85 years. That means I should have expected another 25 years after my birthday next summer. Statistically, 90% ALS patients die within the first five years of this awful illness. On my next birthday, I will be at year four and a half with ALS, 85% of the way through the path to a 90% probability of death. The odds are pretty good that I will not see age 61.

Last night I was explaining ALS to a fellow in our group. He shows up at an event every few weeks. His home is in Edmonton but he works in Calgary on a regular basis. When he is in town, he comes out to Trivia and Name That Tune. Surprising enough, he had no idea I have ALS. So I told him about ALS, shared my story and pathway through the disease, and finished up by saying I probably had a year or so left, then I would die.

His immediate response, as is the response of so many, was "We're all going to die." My answer was "Sure, I'm just going to die about 25 years to soon." Then I did the math on that. I am going to miss about 30% of my expected life. That is a bit of a shocker, to realize that I am essentially going to miss on the last third of my lifespan. It's the kind of math I don't like; cruel, heartless, and completely accurate.

This is no theoretical estimate. These are the numerical facts. What about that last 10% you ask? After all, things seem to be going slowly for me. I get a lot of "you look great for someone who is terminally ill." That's the whole deal with ALS. You look great but you are dying. My disease is following a fairly normal progression, just not a quick one. The odds are pretty unlikely that I will be part of that 10%, and even if I am, I won't be part of it for long. ALS will kill me, about 25 years short of my allotted span. That's what the numbers say.

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