On my birthday, many years ago, I remember one particular pronouncement from one particular neurologist, “This won’t kill you,” this being my condition, Adrenomyeloneuropathy. The delivery was brusque but honest. Hearing it was a relief at the time. It moved me from the possibly terminal into the chronic category.

Since then, I’ve discovered that chronic is complicated, ongoing, unresolved, toilsome, misunderstood. Picture the bad swimmer in the deep end: panicky splashing, head above water, reaching for the safety of the ladder, but not in serious danger. That’s me, much of the time, though I downplay distress. In rare times of extreme need, I crack the chronic-to-crisis barrier, but most situations don’t rate high alert. Within the medical model, the goal is to fix the problems that I present, and I’m a cipher, it seems. I’m not in remission. I’m far from healthy. I experience symptoms that can’t be explained, etiology unknown. We pour over tests and juggle my meds. I occupy a kind of limbo that physicians find frustrating. That my family and friends find troubling. That I, myself, find fatiguing. As a “progressive chronic,” there’s no relief in sight.

 

Don’t cry for me, Argentina. Like any stalwart activist, I’m trying to reclaim that label, even as I struggle to live it. Living is chronic, if we are lucky. And I count myself as lucky.

I am still touched by the letters people wrote, the conversations I had, and the tears we shed when I was first diagnosed. My family rented a vacation house with a bay view in Rhode Island, and we all gathered to process the news. My wife and her sister trekked to Machu Picchu with me in mind. A friend took a photo of my atrophied spine to Sansepolcro, one of my favorite towns in Italy. Those early, lovely gestures warm me like distant memories. Every time I’ve been hospitalized, help descends, in droves. It is comforting to know that people will come when I sound the alarm.

What’s between 911 and 411? That’s what I’m trying to figure. And why do I privilege crisis over chronic? Instead of dialing the fire department, I now track down the repair guy when the elevator is out, and then finish my to-do list while I wait. When my wheelchair breaks, I call the bike shop across the street for a quick fix so that I can keep on moving. Would-be emergencies have become problems to be solved. That’s a measure of my growth, an increased ability to cope. It’s hardly heroic. It’s not flashy. It’s the daily grind.

Because my condition is chronic, I always need help. (Except when I don’t. And even then, I just might. Especially if you ask.) So I appreciate the kindness of the local pet store owner, the store with impossibly steep stairs, who delivers dog food when I call in advance. I cherish the old friend who surprises with pizza and beverages, for no particular reason. I’m grateful for the neighbor who unloads the car, saving me an extra trip.

In crisis, skilled professionals stand at-the-ready. With the ubiquity of chronicity, we have to help each other. It takes awareness and patience. And it may be as small and as important an act as retrieving that just-out-of-reach toilet paper on the top shelf of the grocery store on the evening of my latest birthday when I was completely spent and really needed the gift of pragmatism in two-ply form.