Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, January 6, 2014

The Rolodex - Part III

The Rolodex of people I have known with ALS has grown to be huge.

It can teach us some lessons about how we need to speak to the correct numbers correctly.

I don't clean out my Rolodex annually to throw away the cards of those who have died nor do I re-use the cards of those who have died.  If I did, it wouldn't really grow.  It wouldn't be representative of the cumulative loss that ALS has caused.  It would not be respectful.

But... when we permit prevalence to be "the gold standard" (a term used by a major ALS organization) for measuring disease impact, that's exactly what we are doing.  We are only counting people living with ALS at this moment.  We are discarding the deceased.  We are kidding everyone, including ourselves, about the numbers and the impact of ALS.

If we reuse those Rolodex cards so that there is just one card per person living with ALS (as the prevalence metric does), we somehow confuse Mom with the six people who have followed on her card or with the dozens who preceded her.  Ditto with Rob's, Barbara's, Pat's, Ben's, and now Scott's cards.  Those are all distinct, beloved human beings with their own families and friends and talents and contributions.  One card should not be shared.  

And cards should never be discarded.  Ever.

It's time that we learned to explain the impact of ALS and why prevalence (the number living with it at this moment) is a red herring.  ALS has a relatively small prevalence, yet a huge incidence (the number of people who get it).  That's a toxic combination.

Just look at a Rolodex of people with ALS that doesn't toss out or recycle the cards.  It grows painfully and quickly -- more quickly than most people perceive.

Let the conversations begin.

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