This is what you get for hoping.

On the disappointment and durability of hope

Dr. M entered the exam room, took one look at me, and beamed.

“This is the healthiest I’ve seen you!”

I wasn’t surprised, but I was grateful. I had been sensing my strength long before my immunologist saw it. For months, I’d been seeking strength like my dogs hunt backyard birds—tracking it, watching for it, pouncing on every possibility. After the hardest and longest medical crisis of my life, my days and weeks finally had structure. I had submitted the manuscript of my next book to my publisher, traveled internationally alongside my family, and was back to the simple joy of the blank page. While waiting to get edits back on my book, I was taking myself to poetry school, playing with form and subject matter and voice in ways I’ve dreamed of for years. I was remembering the magic of discovery that emerges with a little wonder, curiosity, and honesty. Writing in my study felt like watching a rainbow emerge. Something was always stunning me. At the end of most workdays, I drove myself to the lap pool. For five evenings of every week, I dated delight. I got to know my new and growing grit. I savored the sense of my shoulders slicing through cool water, my quadriceps flexing firm. I watched my lap count grow. I saw my body return, slowly but surely, to a shape I recognize. I felt the fury of fragility waving goodbye, replaced by a strength I could make. I knew what it was to glide.

I wasn’t surprised when my immunologist said that since I’ve been doing so well, he felt I could switch to a stronger concentration of my IVIG treatments to effectively cut the infusion I get every three weeks down from 9 hours to around 5. I was healthy enough to get that sliver of my life back, and it felt like a medal or a prize for making it through the misery of so many months before. It was supposed to be a hopeful, good change.

Except, it wasn’t.

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This is what you get for hoping.

I had my new stronger infusion (same dose of medicine, just a much less diluted version) on Friday the 7th. The night was rough, but the night after IVIG usually is. It’s a lot for a body to take in 80 grams of purified antibodies from many thousands of healthy donors. To circulate a city’s worth of health into one human body takes energy and time and patience. I usually feel mostly well by the next morning, just slightly sluggish. But by midday Saturday, I knew something was off. My head was aching. My body felt heavy. I couldn’t think clearly.

I leaned into rest, my old and nagging friend. But no amount of bed rest made the head pain less brutal. Instead, my neck became a throbbing rod. I started getting a low-grade fever. I struggled to form sentences. I knew: something is not right.

That Monday, a nurse practitioner at my immunology clinic diagnosed me with Aseptic Meningitis (AM), an uncommon adverse reaction to IVIG that particularly happens when too big of a change is made too quickly, in one’s dosage or infusion rate. The hopeful change my medical team thought would be great was simply too big for my body.

“This is what you get for hoping,” I thought to myself. “More hard things.”

But then, I knew that wasn’t the whole truth.

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I have spent the last ten days in a dark room trying to remember I will again bear light.

Well, except for the day I went back to the clinic for IV fluids and steroids and then the full day over the weekend that I was admitted in the hospital, in another dark room.

For ten days, I have traced the truth of hope. It is the shape of a syringe, filled with steroids I didn’t want to need. It is the round rim of a water bottle I sip and sip and sip to convince my brain and spinal cord lining to chill. It is the bowl of pot roast a friend brought to our door. It is the parentheses of an earbud, cupped to my skull, inviting my mind into stories beyond the sad one I can see. It is my husband’s hand, grasping mine night after night in bed. It is him, standing at our dresser, lighting a candle: I am lighting this candle in vigil for you. It is his coworkers, a nurse and a former ER doctor, offering advice we needed to try to make this less awful. Hope is dark and formless like the void of the deep that became the whole world. It is a strange surrender to all I cannot see, because somehow, something strong always emerges from the formless deep.

And mostly, hope is empty space. It is the miracle of holding emptiness as that which shall be filled.