I wish I knew Patrick before he breathed his last. He and all the friends we've lost to ALS. The celebration of his life that Mary and their kids - with the help of their wonderful o'hana - put together, portrayed a Patrick that we could only guess. I am one of those who knew him only as the man who got sick; the man, who looked so lost in his wheelchair, that night he was honored with the Courage Award.
For instance, I didn't know that Patrick was an avid fisherman. I imagine him in a boat, winds tousling his jet black hair, tasting the salt spray that settle on his cheeks, daring his catch to out-maneuver him as, in a rhythmic dance of foes, he alternately releases and reels in and out, reveling in the challenge. There would be pride in his heart as he raises the banner pronouncing his victory. There would be fishing tales that evening as he and his buddies would gather around the coolers, gulping their six-packs, recalling and savoring the adventure of the day.
Instead, each time I visit, I see him immobilized in bed, a bib under his chin catching the slight drool that leave the corner of his mouth, watching his favorite program while those around him discuss the events of the day. To me, he looked like one who was off in his own world long before he left this. Perhaps the inability to communicate in real time left him frustrated. Mary also told of how he battled pain, uncommon in most ALS sufferers but not unheard of. Pain is like a possessive lover: it demands - and gets - complete attention.
ALS takes its toll on many of its victims, robbing them of the opportunities to show their potential, silencing their voices, tearing apart their lives and loves and exposing their vulnerabilities. It is tough to be yourself when you are well; it is even tougher when a disease comes devouring.
So we content ourselves with the digital representations of the Patrick that was. I am left wondering of what might have been the Patrick for his wife, his children, his friends, his community - the many wonderful possibilities. I feel angry at how puny my own attempts are at easing the impact of ALS in people's lives.
Meanwhile, I salute Mary in her tenacity; Kelly and Kryn, in their innocence; and all their friends and family in their commitment to stand by them.
But go now, Patrick. Go, follow the fisher of men.
