Nate shifts from one foot to the other as he stands in front of the camp clubhouse in Stillwater, N.J. At 15, his thoughts are still occupied by video games and goofy jokes, despite his own body and certain life events pushing him toward adulthood. He’s warm and approachable, with an easy smile and an earnest manner that can be disarming when you first meet him. Clad in summer-camp attire—dark sweat pants, dusty sneakers, and a blue “Swag Don’t Come Cheap” T-shirt—he takes in the last moments of a weekend that’s been loaded with climbing, storytelling, fishing, hiking, and plenty of laughter. In a short while, Nate (not his real name) will head home to bury his mother, who died last week from amyotrophic lateral sclerosis (ALS), and it will be then that memories of this weekend will be his salvation, something sweet to savor as the bitter pain of loss threatens to overwhelm him.
In front of him stands a line of 30 or so fellow campers, counselors, and parents, who are all too familiar with what Nate is going through. They share the enormous grief that comes from having a family member with ALS (also known as Lou Gehrig’s disease). And as the line advances, each person wraps their arms around Nate to give him a deep, comforting hug. Some of them cry, others clasp his hand or give him a fist bump, and a few softly offer words of support that only he can hear. Let us hold you up just for a moment.