#IAmALS

As I write this, on June 1, a month of #ALSAwareness has come to an end. This year the new organization I Am ALS was all over the place on social media: “I am …. You in? #IAmALS.” Statements of I’m hopeful. I’m pushing for change. We can do this. We’ll find a cure. Cheering on new drugs, new infusions, new trials. Cheering on those who find their way into these things, find their way into taking part. Cheering on those who just got a trach. Cheering all who fight hard and pubicly.

And also remembering to cheer for simpler things, for getting on with life. To cheer when folks with ALS travel or just get out in the back yard or tweet or post. To cheer for caregivers and spouses and children and parents. Remembering those who grieve, because #IAmALS includes everyone — even those who live with loss because of ALS. Because — it’s a horrible disease and it moves so quickly. A few intense years of living and loving and recognizing all the good in life, the way you can perhaps only when you are all too aware that it ends and will end quickly.

Standing as someone who has stood at the memorial service, committed ashes to the ground, what does it look like to fight on? How do you hold the soft edge of hope?

So many things rise up to harden the heart. Religion and religious explanations for tragedy. (“God has a purpose.” Or whatever). Cynicism — we all die. Tough luck. Bad genes. The way of the cross. Soldier on. Something better is waiting in the future, or at least something else.

But losing a son at the age of 30 to ALS hurts like hell. Losing a child, a loved one to anything hurts like hell.

What would it feel like, to have a cure for ALS emerge in the next few years? Some drug that would manage the disease, slow it, turn it into something to be lived with for a long time, if not cured completely. What would it feel like to know that if only Kris had gotten ALS ten years later, it would not have ended in his death? Sometimes I wonder about this—about how I will feel. I hope to find out.

Kris talked, wrote, hoped about finding a cure so that others after him would not have to endure and resign themselves to death from ALS. I know he embraced that sincerely. It has been the thing that has most impressed me, most weighed on me about ALS warriors raising money for research, taking to social media, walking, biking, everything they throw themselves into to raise awareness and raise funds. They know they’re doing this for a cure in the future, a future too far off in years to help them. Though perhaps that is changing.

On some days, certain cloudy days in June, perhaps, or when I am too much on my own or worn out by work and boredom, it’s very hard to keep a soft edge on hope, a soft growing edge, or to look positively into the future. After handling all the crappy tragedy of the last 20 years — Lon, Kris, neurologic disease — it’s hard to escape the sense of dread, anxiety, worry. What’s the next damn thing around the corner?

I think myself a fool for not knowing life would be this hard. (Am I?) I am far more vulnerable than I wish to be, less strong than I think I should be. I cherish my pain because it’s what’s left of love.

“I want to know what love is,” goes the song. Well, there it is—it hurts. But this, I think, is also what keeps hope alive.