“Let other people say the hopeful stuff”

“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.

5 thoughts on ““Let other people say the hopeful stuff”

  1. Howdy Nate

    Feels like part of the Divine Plan is to bring you to early Elder hood. Such trails are never easy…. you do have the Heart and plenty of support. I know in my own Heart that you and Kat Are embracing this rending flow of Life with deep Love and courage. YOU are and will be Present for you son. You made that choice long ago without knowing in advance what might come down the pike . You will not turn aside even then the mind screams for a reassuring answer…. you are that Big…. big enough to stand in each moment with nothing more than a willingness to serve in that rawness and unknowing. Love emerges in so many incomprehensible ways…
    Bless you my Brother


  2. Mahalo, Nathan…this offered a little more of a window into your comments on FB, assuming they’re related. May the heart keep breaking, revealing and unraveling itself on the wending way. May temporality and presence continue to teach us to be with what is, as it is…without that four-letter word…hope, steering us away from the wakes enveloping our birch bark canoes…


  3. Your words are so beautiful, truth filled and vulnerable. I see your bravery in entering into this path of learning, even in a time of such immense sorrow in your life. I honor that bravery and your contribution to growth for you, for your family, your son, all of us. I know in my own way, from my life challenges that have been huge in there own way that there is no cure, but that allowing our hearts to be truly pierced by despair somehow has a flavor of something like relief, and then the sorrow comes again….bless you dear man. I hold you and your family in the prayers of my heart.


  4. Thank you for your prayers, your blessings, and your good words, Marianna. The irony of it all is that I began this path of learning, even enrolled in Orphan Wisdom, long before I knew what was in store. Life has this way of bringing us along, revealing the interconnectedness as we go.


  5. Amen, cousin, Amen. Handle this season in full. Be present and lean into your emotions. The joys will still come your way, and the opportunities to build into your boys will make themselves evident. I love his thought of allowing this season – and your emotions – to just be what it is / they are.

    Love you.


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