Chron-ic. Adjective. Continuing or Occurring Again and Again for a Long Time

Chronic disease has a language, and it’s taken me a while to get comfortable with its specialized vocabulary

I’ve been a writer for a long time. Long enough that the initials MS can still make me think of manuscript. Between novels, nonfiction, and one spectacularly failed screenplay, I’ve written about subjects ranging from Robin Williams to ancient Egypt; passive-aggression to alchemy; the assassination of JFK to the lure of animal babies. I’ve written about myself sometimes, too. So, a decade back, when I was diagnosed with multiple sclerosis, it was natural that my friends would ask if I planned to write about it. I said I didn’t think so.

One reason was that, then as now, I was aware of how many people had it so much worse than I did; I didn’t want to sound as if I was feeling sorry for myself.

Another reason was that I didn’t want to be feeling sorry for myself. I had just published one novel, and I was starting on another. I had signed on to edit an anthology, and I had two kids who were still at home. Like many people trying to cope with the newness of disability, I wanted instead to be marshalling what I could of my abilities.

Allow me to explain

Certainly, there have been times since then when I’ve itched to find a way to explain — in one place, at one time, in clear language — what it was that had happened to me, how my life had gone in a short time from being one thing to being another. But chronic disease has a language, and it’s taken me a while to get comfortable with its specialized vocabulary.

Disease modifying drugs. Evoked potentials. Upper motor neuron. Even multiple sclerosis: It isn’t one thing but has four different types — and possibly more that haven’t been named. Its symptoms vary not only from person to person but year to year, day to day, and sometimes hour to hour. It’s a disease that can leave scars anywhere in the brain or spinal cord, so its effects on a body can range from one tingling finger to paralyzed legs and just about everything in between. To understand MS, just picture a nice street where for no good reason the houses have been infested with mice that are nibbling on the electrical wires.

There’s no telling whose house will have the most mice or how much nibbling they’re going to do. But based on those two variables, the residents of one house might occasionally need to do without a toaster, while the residents of another might have to stumble around in the cold and darkness every night, for the rest of their lives.

What I say to people who ask me about my illness is that my main disability is fatigue. At that point, many will ask if I’ve tried to drink more coffee, take more naps, change my diet, do yoga, try acupuncture, and/or visit the Dead Sea. These questions are thoroughly kind — and logical — because it’s natural to assume that I am tired or sleepy, stressed or depressed. But when I say fatigue, that’s not what I mean. I mean the thing that’s upended my life and so far hasn’t yielded to any treatment, change of location, change of habit or state of mind. My fatigue is a toxic combination of exhaustion and imbalance, an unpleasant awareness of my body in space, an awkwardness that makes walls and doorways spring out of nowhere and bash into my legs and arms. My doctor calls this the “wall of fatigue,” but I think of it as a dark creature-cloud that is made up of dust and ashes but is heavy enough to sit on my legs, pin down my arms, and laugh at me. When I curl up around a pillow, it curls up around me. It shows up every day around three, and I’m almost always in bed after that. So that’s what I mean when I say fatigue. And that’s why fatigue doesn’t say enough. Because it also means all the things I’ve said so often to family and friends:

I’d love to, but I can’t.

I know I went out yesterday, but that’s why I can’t go out today.

And I am so, so sorry.

Between a Problem and a Lifestyle

Another word in the language of chronic illness that I’ve found challenging to understand — let alone to explain — is chronic. MS holds no monopoly here: Millions of people suffer from chronic pain, chronic Lyme, chronic migraine, Chronic Fatigue Syndrome, diabetes, Crohn’s Disease, and on and on (and that’s not even counting mental illnesses, which of course should be counted). In the world of medicine, chronic means six months or more. In the world of people with disabilities, chronic means the difference between a problem and a lifestyle.

I used to walk my dog two miles each morning, carry my son on my shoulders, cook meals for dinner guests, shop in real stores, use my passport and, occasionally, even use my gym membership. I could knock you insensible with a stack of sentences that begin “I used to.” I’ve been ill for more than a decade, but when I try to do most of those “used-to” things (not the one with my son; he’s twenty-two now), I am shocked all over again to be in a body that won’t comply. By now, you’d think I’d be shocked that I’m shocked.

I think the most natural assumption to make about chronic illness is that if something bad is always happening, then it must be bearable. But that’s not true. It just must be borne. On Patients Like Me, a website that hosts forums for patients with various diseases, one person with Lupus recently asked: “Does anyone else marvel that they’re still alive?” In 1918, the author Katherine Mansfield (who died at 34 from TB) captured the incessant nature of her disease when she wrote to a friend:

“I know so devilishly well the agony of feeling perpetually ill and the longing — the immense longing — just to have what everybody else takes so easily as their portion — health — a body that isn’t an enemy — a body that isn’t fiendishly engaged in the old, old …torture of breaking one’s spirit.”

That is what I think the word chronic means.

I’ve read about how others cope with it. In the world of social media, there’s no shortage of places to vent and console. In my life, I’ve tried to find a graceful balance between outrage and surrender.

Still, whatever I’m trying to do (and I try to do as much as I can), I find myself cycling through the five stages of grief, on a fairly regular basis. Going through that cycle can be isolating in itself. I can’t expect that people will mind-read which stage I’m in at any moment. Some days the stage is denial, and I’m hurt not to be invited out; other days it’s anger, and I’m aggrieved if an invitation makes me think that my friends have dismissed or forgotten that I’m ill. How do my friends and family hold on? I’m just grateful that they do.

In that same letter from a century back, Katherine Mansfield wrote:

“One will never give in and so — All the same, it would be more tolerable if only people understood — ever so little — but subtly — not with a sort of bread jelly sympathy — but with exquisite, rare friendship.”

I’m not sure I know what bread jelly sympathy is, though I’m guessing she meant a sympathy that’s overly sweet. But I do know what exquisite, rare friendship is. When I first got sick, my children were 11 and 15, and my husband said something incredibly wise. He told them that the disease had happened to all of us; that I was just the one who had to deal with it physically.

It was true: They and my other family and friends had to make adjustments, dealing with the fact that I often couldn’t be with them, even at their special moments. Like one weekend, when two great friends get married in a ceremony three hours away. Or one night, when my daughter sings in a jazz club. Or one day, when my son runs a marathon. Or monthly, when my husband travels the world on business to hotel rooms that are tantalizingly too large for one.

I’m lucky to have amazing doctors who keep trying new treatments. My physical therapist, Marcus Forman, is the best (my GP says that people always use “the best” to describe their PTs — and their tour guides in Israel).

I’m lucky, too, that I didn’t have an office job or a service job and that I work at home, just as I’ve done for twenty-five years. Even on my worst days, I can sit at the desk I’ve always had, stay in touch with friends by phone or email, and sketch out another scene for my book; jot down another plot point or note. That’s what I’ve always done, and it’s been a refuge from everything that’s disabling or unfamiliar.

Write What You Know

Part of that writing routine has often included trading pages with my friend, the novelist Betsy Carter. We read each other’s work with what I think of as loving brutality, and we’ve been each other’s sounding boards when we’ve run into plot or character trouble. I distinctly remember one spring afternoon when she’d come over for a session. I was brooding about my main character, a young woman named Nora who (for reasons I’m certainly not going to give away here) has found herself perpetually confined to Grand Central Terminal.

Stretched out on my couch because I’d hit the wall of fatigue, I looked to Betsy for an answer. Having written through Nora’s discovery of the reasons for her situation, I now had to figure out what would come next. “What can I have Nora do?” I asked Betsy. “I mean, what can she do if she’s stuck in one place all the time?”

I think it was May. Gentle air was wafting in from the river, and we’d talked about taking a walk. But it was just past three o’clock, and Betsy knew (speaking of exquisite friendship) that I was cooked for the day. She glanced out the window at the pink trees. Then she glanced at my stack of pages, and at me, lying on the couch. We both started laughing.

“I don’t know. Maybe something creative?” Betsy asked.

It was one of those laughs that adds years to your life. I’d been working on this novel for more than a year since being diagnosed, and without exactly intending to, I’d been writing about my own life after all. I don’t mean that fatigue or imbalance or the word chronic make an appearance (though the book is called Time After Time, so, trust me, the characters know from chronic). But I’d placed Nora in a situation that was very much like my own. Stuck in Grand Central Terminal (just like my place but with much higher ceilings), she has to find meaning in her life. She has to learn new ways to feel joy, be useful, love, be loved, do her work — with all the passion she can. And so do all of us who know what the word chronic means.