“Stuff” wasn’t really the word he used. “Let other people say the hopeful shit” was what he said. “You can leave that to them, and then sometimes you’ll probably want to shoot them between the eyes. Your task now is to feel what this feels like, to be troubled by it, and to get yourself into the meaning-making business. See, everyone wishes they didn’t have to go through something like this, they ask why did it have to happen to you. Well, it didn’t happen to you. You are standing upright and healthy. You didn’t get this. You’re son did, and he didn’t ask for it. This is his life now and you have to walk it alongside him and help him make meaning of it.”

Not even three weeks after learning of Brendan’s diagnosis of Duchenne Muscular Dystrophy, I traveled to Ontario, Canada to attend the first session of the Orphan Wisdom School 2017. I didn’t go to get more information. I’m up to my eyeballs in information and I have more than enough to live out my days well-enough informed and able to talk like I know something about something. What I did go there for was to learn, and especially to learn from Stephen Jenkinson, an elder in the truest sense of the word. I have been lucky enough (or perhaps foolish enough) to have a keen nose for elders and to know one when I see one. I think it has something to do with the lines in their faces that come from something, or somewhere, more than age. There are those who carry enough intention, clarity, and wisdom that being in their presence is enough for me. Stephen is one of these such elders.

Stephen told us we were there to learn, which he defined as the unbidden and unsought encounter with unwelcome things… things we already know. This learning, he said, is expensive because it is incredibly costly. We were told that we were under no obligation to know anything. We don’t have to know anything in particular to learn. But there was an expectation that we would learn… though tracking with his stories and his roundabout way of getting to the point was an exercise in and of itself. Stephen said he doesn’t care about our inability to feel able. He cares about us, not our disability. The feeling of not being able is an assurance that nothing happens. 

So when I approached Stephen to talk to him about the trouble that I carry with me and the burden on my heart, I offered that it may not be a good time as he had just talked for three hours. But he paused with me and opened the door. I wept (it was the second time that day already). On my better days, or perhaps my worse days, I try to be a hopeful person. I tried to rally my emotions and said, “I know. We have a lot of life left to live. I will still teach him what it means to be a man, will still make many memories, will still introduce him to a village and to elders he can learn from. It’s not over yet.”

And I’m sure, knowing what he was seeing me do, he essentially told me to cut that shit out.

The lesson is that I don’t have to be hopeful. Hope takes me away from the present. It is not real. What is real is what is happening now and the only way to speak of trouble, to make it real and tangible and to allow it to form me, is to let it shake me to my bones. Sometimes our blood needs to run cold just to feel what it feels like and so we can know what it feels like to get warm again.