6 years (October 14)
2180 days
He said, “you have ALS “
I heard, “your dying”

Not a day goes by that I don’t reflect on this exchange. 2-5 years is the prognosis, quite a sobering thought, right? So am I now on borrowed time, aren’t we all. ALS continues to take from me; hands are useless, voice is faltering, legs can still support me and my breathing is adequate.

ALS has drastically altered the course of our family’s life, adapt to live. Most importantly requiring us to open our hearts and minds to others. Others in the sense of those also afflicted and also to support and assistance offered and given. Our paths have intersected with others whose life inspires us; strength and resilience that is both infectious and driven. Driven to create a world without ALS.

We have also experienced profound los, for this disease inextricably intertwines our life to others and their loved ones. Extending our family well beyond blood, impacting our very souls.

So today I don’t observe the anniversary of receiving a fatal diagnosis. But instead the day I was bluntly told by the universe, live you fool, the choice is yours. Yes it is extremely painful and difficult to lose all physical abilities, to be left wit only your mind and eyes to engage with the world. Voiceless, breathless, motionless contemplating the world as it continues to move as always.

To be honest it’s just another day, but that’s the beauty of it, I’m good with just another day.

The Juan and Only