Blog #1: AN OUTSIDER STEPS INTO THE RACE

It was a gorgeous day for the September PEDALS bike/run/roll! The morning unfolded with cool breezes and busy volunteers setting up chairs and tables, and planting signs for sponsors and family teams – company logos, names, faces going up everywhere at beautiful Townsend Park. But I was feeling oddly anxious, nauseated even, not knowing what I was stepping into. I had never been to this event before: How many people? How many families struck by ALS? What spaces were there to navigate? Would the space I set up for Tim Van Noord to honor his donation, his life and death, and of course his caregiving family be appropriate? Would anyone want to step into that tent…into a space where one man’s voice of his life with ALS, of his grief and struggle, and unexpected joy was floating on the breezes? Yes, they did. As the curtains rose and fell with the winds, and the poems rustled and wrestled against each other to speak, a steady stream of people made their way under the tent, pausing to hear Tim’s story and tell me theirs. Some had lost their loved one years ago, and some in recent months, and the weight of it all was still very heavy. I am learning that ALS takes years to process, and maybe needs a language to help us translate its impact that we haven’t discovered yet. One man who came to the tent had no idea what ALS was. He was a runner who simply signed up for another 5K, one near his home. He stood for a long time under the tent, reading Tim’s poems and watching others do the same. After almost an hour, he came up to me and said quietly, “This is really powerful.” Then looking around at all the activity of volunteers and families, he shook his head and said quietly, “I had no idea that ANY of this existed.” He had been an outsider to this disease, just as I had been before meeting Tim and his family. This young man was drinking a draught of an elixir he did not know he needed – simultaneously sobering and refreshing. It was clear, without him saying another word, that he would go home from his road race that day a very different person. He was changed by seeing the skilled efforts of the Susan Mast ALS Foundation team, by watching families stepping alongside of and in the place of their loved ones, and by reading the poetry of one man, who gave all the heart he could in the time he had – reminding us that we are really One body, One connected human community. 

So, keep stepping in. Your voice – your story, your raw expressions of grief, or just your name – really does matter. Truly, every day you live, you have something to give. Share your living!