Here is a situation I’ve gotten used to. Jes and I are visiting family or close friends, and over the course of a conversation, someone asks Jes how she’s doing. She answers truthfully. The conversation goes on. Eventually, Jes excuses herself—to go to the bathroom, to get a snack, to take the dog out. The reason doesn’t matter. In any case, she leaves, and in her wake, there’s a pause, a silence just long enough to confirm that her footsteps have carried her out of earshot. Then that same someone, usually a parent but not always, turns to me, their forehead pinched delicately with concern.

“How is she doing?” they ask, leaving unspoken, but still understood, the missing “really.”

How is Jes really doing?

For a while now, this same scenario has played itself out with a variety of people and across a number of contexts. I can understand why. Four and a half years ago, Jes got diagnosed with a chronic disease, one that’s not only medically complicated but that, during a flare up, can express itself in a mélange of seemingly unrelated and unpleasant symptoms. Put differently, it’s a disease that, because of its unpredictable ups and downs, can be really hard to describe to a lay audience. As a result—and as illustrated by the frequency with which well-meaning family members and friends have followed up with me in Jes’s absence—I suspect that people often worry that Jes is holding something back when she answers that familiar question, “How are you doing?” Perhaps they think she’s putting on a brave face. Or maybe they think that she’s trying to spare their feelings, or else that she’s just smoothing out the technical details, suppressing information—potentially important information—in the interest of understanding.

And honestly? Those suspicions wouldn’t be wrong. Jes does hold back information. Depending on the context and the audience, there are certain things she chooses to talk about, and there are certain things she chooses not to talk about. And I know this because we’ve discussed it. Just a week ago, in fact, the two of us made an unnecessary trip to the emergency room, at the demand of a spooked NP. Twiddling our thumbs as the hours ticked by, Jes from her hospital bed and me from a nearby uncomfortable chair, we joked not just about what we would or wouldn’t tell our family about our little excursion. We joked about what we might or might not tell the doctor, in the hopes that strategically doling out information would make for a quicker escape.

Knowledge, as they say, is power.

And, anyway, it’s exhausting enough having to narrate one’s symptoms to the satisfaction of the medical establishment. Never mind having to narrate those symptoms to the satisfaction of the people who love you.

Perhaps that explains Jes’s own reaction, when I told her how I meant to begin this month’s blog post.

Sitting at the opposite end of the couch, a blanket puddled in her lap and the cord of a headphone twined around her finger, Jes groaned when I mentioned how often friends and family come to me for a second opinion. “Oh, that’s so irritating,” she said, flicking the headphone away from her. As she went on to explain, the problem isn’t that people worry about her. She knows that they worry about her, and she appreciates it. What bugs her instead is that, in most cases, she’s already said all that she wanted to say. If she wanted folks to know more, she would have told them more. Yet despite that, people still feel the need to take that circuitous route around her back so that they can ask me about all the details she might or might not have left out.

By Jes’s lights, then, it’s a matter of trust, plain and simple. And I understand that. I do. Even so. . .

No, not “even so.” I agree that it is Jes’s prerogative to choose what information she does or does not share. They’re her symptoms; it’s her body. Nevertheless, somehow I must also account for the fact that for years now—for almost as long as I’ve been writing for the post calvin, in fact—I’ve kept revisiting the fact of Jes’s sickness, worrying it as I would a loose tooth, over and over again, in one essay after another, each of them offered up not just to family or to concerned friends, but to anyone. To everyone. Where, I wonder, does her claim on this story effectively end? Where does mine begin? And to what extent can those claims be parsed at all?

At best, the answer I’ve arrived at is this: Jes’s story is mine to share to the extent that I undertake it carefully, and lovingly, and with her consent.

4 Comments

  1. Avatar

    Finding words and ways to to tell the story is so difficult. I often find that I’m just out of energy to explain the nuances of what I’m experiencing, and often, what I’m experiencing physically, emotionally, and spiritually varies moment by moment. I’ve been so grateful for the ways that my family helps me to tell the story. It takes some of the burden off. I’m sure that Jes feels the same way. Thinking of you guys as you continue to navigate it all.

    Reply
    • Ben DeVries

      Thanks, Ansley. It’s kind of you to comment. Based on your own writing for the post calvin, I imagine you and Jes would, at least in some respects, have some pretty similar stories.

      Thinking of you, too, and hope you’re doing well.

      Reply
  2. Avatar

    Ben, I will write more tomorrow, but you have so accurately described it. I was diagnosed with an AVM(google it) in 1978. January 30,2020 will be the second anniversary of the brain surgery that saved my life but put me in varying but constant pain. I am part of an online group of about 8000 from all over the world. I would love for you to think of how we can share it with them and more. Well done, very well done.

    Reply
  3. Kyric Koning

    Ah yes, words shape the world and we writers take hold of their mystical energy to bend to our will. Your concern, not only for your wife, but all who partake in this story is well placed. Hopefully, the path will become smoother for you as the journey continues on.

    Reply

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