Quote of the Last 17 Days: Hope

“Hope is one scary emotion.”

This quote comes not from someone famous—at least, not famous yet—but from my friend Alex. She is ten years younger than I am, trim, fit, beautiful, and because of a muscular affliction, often seated in a wheelchair. At the same time that Adrian and I are fighting to recover Martin, Alex is undergoing a costly experimental therapy aimed at regaining her mobility. “Hope is one scary emotion,” she told me in an e-mail and then continued:

I’ve been thinking a lot about hope lately, and my total fear of that particular feeling. Call me emotionally conservative or a cautious optimist (really cautious), but there is nothing more devastating (down on the floor crying with your coat over your head while you’re alone in the office) than feeling like you’ve put your hope in something that has failed. Imagining that your life can be different and then ending up in the same position that you were in before. I find that more times than not, feeling let down after I’ve dared to hope is what puts me in a near-catatonic state. . . . It’s been a long time since I even thought that I could be fixed.

With those words, Alex was speaking for both of us.

I have a conflicted relationship with hope. When Martin is doing well, hope creeps in, and invariably I wind up disappointed. Invariably, because when I’m hopeful, anything not perfect feels like a nasty, swollen raincloud hovering over my picnic table.

Take yesterday, for example. At the breakfast table Martin was drinking his apple-cider-vinegar beverage, and I noticed that he held the stainless-steel straw in the middle of his mouth, his little lips puckered around it. A big deal? A huge deal. Through his HANDLE therapy we’ve realized that Martin has midline issues. He does not like to reach his left hand to his right side, or vice-versa; he turns his head to watch action from the corner of his eyes; and he clenches straws with his molars, dangling them from the edge of his mouth. For months I have maneuvered his straw to his mouth’s middle and held it there while he slurped. Each time I released the straw, his tongue kicked it back to the molars.

Now here he was, unprompted, unassisted, puckering his lips around the straw.

I felt so hopeful. I seized Martin’s notebook—the one we use to communicate with his school—and wrote, “We’ve seen a lot of improvement in Martin lately.” Then I sent him off to the school bus.

I meant, of course, to prompt a similarly upbeat response from Martin’s teacher, something along the lines of, “So have we! He’s concentrating much better.” The moment Martin arrived home from school I pulled the notebook from his backpack and checked. Nothing. His teacher failed to take the bait, and that failure, unreasonably, crushed me. I assumed that she had seen my note, realized its purpose, and made a conscious decision not to respond, because she had observed no recent progress or improvement.

Martin’s teacher does not respond to everything I write in his notebook, especially when I give non-specific information (as opposed to, say, “Please note that Martin will be absent tomorrow for a doctor appointment”). Nor does she generally address his progress in the notebook; for that, we hold frequent in-person conferences. I can only imagine, also, that the daily grind in a classroom of special-needs pre-schoolers allows limited time for musing extensively, in writing, on “improvement.”

None of that mattered when I saw the empty notebook page yesterday. I had spent the day feeling hopeful, and my hope is so fragile that it just waits to be shattered.

So for the most part, I try to avoid hope. When I sense hope fluttering through my chest, I try to diminish it, by focusing on Martin’s shortcomings and areas without recent improvement.

And therein lies the conflict. I dodge hope because it invites an unbearable parade of emotional highs and lows. On the other hand, I can’t continue this path without hope in Martin’s recovery. Hope is sustenance, even if I partake only when Martin’s progress is undeniable.

Today, unlike yesterday, and even though that straw again was in the middle of Martin’s mouth at breakfast, I will not allow myself to feel hopeful about Martin’s recovery in any present or immediate sense. Instead, I will hope for my friend Alex, and allow her to hope for us.

When hope becomes an enemy, at least we have our friends.

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