Gronk's Grace team at the Walk to Defeat ALS, Rockford, IL, Sept. 19, 2015. Kris Grahnke in the middle with the White Sox cap, wife Michelle on his left. I'm in the front holding Eliza's green jacket; she's on my left. |
There were many, many teams and groups and families at today's ALS Walk. Ours happened to be the largest group and the group that raised the most money. I credit my intensely social, hard-working, pumped-up advocating son Kris with most of this. He worked hard to get all these people enthused and to let them know how much this all means to him.
But there's also the fact that this disease has hit him square in the middle of a young and expanding life, like the biggest gut-punch possible. This hurts and disturbs the rest of us, too, and upends our confidence in the future, in life itself. It means we've had to find new ways to keep doing what matters and what's meaningful.
Everybody at the Walk today had had that gut-punch experience. There were power wheelchairs aplenty and loved ones well remembered on t-shirts and banners. Every now and then I looked around in awe, with a catch in my throat put there by the power of people coming together to help one another. I can keep saying life is good, God is good, because so many folks come out to support Kris and Michelle and the fight against ALS. They're not alone.
Disease and suffering and trials and other things--being different, being mentally ill or addicted, being disabled--all these things isolate people. We think they do it to themselves, but really, it's all too easy to set the hurting ones off to the side. To leave it to the professionals to help them. To pity or admire or stereotype them away into a corner. To keep the mess and the fear and the helplessness away from lives that are tidy and nice--or appear to be.
I have that same catch in my throat sometimes when I go to Opportunity Knocks events. OK is a fun program my daughter with Down Syndrome attends--activities of all kinds and a community of "Warriors" and young adult staff. Everybody is respected, anything can be adapted, and they cheer like crazy. Their fundraisers are awesome, and often, I look around and feel overwhelmed to know that all these people care about my daughter's life and love to see and talk with her and her friends, right there in the middle of everything.
I feel connected and understood in these communities of the hurting or the challenged in ways I don't necessarily connect with my church community. Why is that? We confess our sins together in church--we share that. But it's a ritual. The words are in the bulletin. They're said out loud, but even if our hearts are engaged, the thoughts are private. We go out to the narthex when the service is over and put up a good front over coffee and throughout the week.
In groups of people with disabilities or disease, in places where their families and friends gather around the need to support them, the brokenness is right there on the surface. There's deep joy. There's tremendous power.
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Saturday, September 19, 2015
Blessed community
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