It has been a good week for ALS awareness. Or has it?
During the broadcast of the Oscars we heard ALS mentioned twice, but did we have the difficult conversations that needed to follow?
While we're grateful for Eddie Redmayne and his honoring of those dealing with ALS, what do we tell the child who wonders why Mom died while Stephen Hawking keeps on ticking? Are we willing to admit how much we don't know about ALS and MND? Are we being clear with the public that ALS usually deals a far too swift demise to people who were pictures of health a year or two ago? Are we being honest with one another that so much of your life expectancy depends on which nasty variety of ALS or MND picks you?
Are we talking about why Richard Glatzer, director of "Still Alice," wasn't at the ceremony? Or where two of our biggest leaders in the fight against ALS, Steve Gleason and Pete Frates, were while we ate popcorn and watched the show?
Life for the healthiest is fragile. For those with ALS, it is incredibly fragile.
During the course of that broadcast Sunday night, someone died from ALS (yes, died) for every statue that was handed out.
That's an outrageous fact. It's not a movie. It's a brutal reality. We need to face it and fix it.