In Sickness and in Health What happens when an autoimmune disease joins your marriage

First, the world doubled. Two cars passed at once in the fast lane; two doorknobs danced beneath his palm. There were two of each word in every other sentence.

Next, he tried to stand after kneeling to plant hostas, and his legs buckled. He tried to lift our sedated seventy-pound dog out of the car and crashed to the concrete garage floor. Hurling logs onto a pile, he felt his muscles lose power mid-throw, fast as a thrown circuit blacks out the house.

Andrew waited more than a month, sure these odd portents would disappear as abruptly as they came. Finally, with the overt casualness of a man worried sick, he mentioned what was happening. I googled and did not like what I found, so I googled ten more times and consulted every form of artificial intelligence I had access to. The answers all boiled down to the same verdict: myasthenia gravis.

I had never heard of this disease, and I did not like the sound of it. “Gravis”—gravid, gravitas, grave. How was I going to tell this man who had fought through ADHD and the attendant anxiety and depression all his life and come out the other side smart and funny and brave that now—surprise!—he might have an autoimmune disease with horrid potential complications?

A few celebs he loves had endured the same disease, among them Sir Lawrence Olivier. When I said, tentatively, “There’s something this might be,” I quickly added those names.

“Well, at least I’m in good company!” Andrew said, wry as ever.

His sense of irony was about to come in handy.

•  •  •

“Myasthenia gravis is a rare autoimmune neuromuscular disorder that causes muscle weakness and fatigue. It’s an autoantibody disease, which means the immune system attacks itself.”

Your own body, turning on you. Like a beloved German shepherd who suddenly knocks his human to the ground and sinks his teeth into a carotid artery. Any attack is disconcerting, but an attack that is also a betrayal? My husband has to negotiate a truce with an immune system that is pumping out antibodies he never asked for, molecules that zap the receptors for acetylcholine. That is the chemical our nerve cells need to communicate with muscles. Without it, the muscles go lax, the body weakens, and energy drains away, leaving only a crushing fatigue.

When we meet with a neurologist, he swiftly assures us that myasthenia “is rarely ‘gravis’ anymore.” Andrew’s case can be managed with a fairly good prognosis. He will not drop dead of this, and he may never even suffer what is called a myasthenia crisis, in which you can lose the ability to swallow, speak, or even breathe on your own. There are several possible medicines, and yes (after I recite my research) there is a surgical procedure that might help.

Andrew nods, ready to try anything. We are traveling through a Neverland where drugs with damaging side effects and major surgery that would open up his chest both feel like hope.

•  •  •

Humans are plagued with more than eighty autoimmune diseases. They can break down the body’s tissues, sabotage its organs, trigger abnormal growth, inflame joints, strip away the nerves’ protective sheathing, twist the guts, or steal muscle strength. They remain largely mysterious. And all over the world, their incidence is rising.

Women are more vulnerable than men, representing 75 percent of the growing number of U.S. adults with autoimmune conditions. So somehow, gender can play a role. Genes can, too, but often there is no obvious history. The emerging culprits are prior infections and the mishmash of environmental toxins we eat, drink and breathe. In other words, we are all vulnerable.

Puzzled by the increased rate—which is projected to continue rising through 2050—researchers tested antinuclear antibodies, the most common marker of autoimmune disease, taken from participants in a general health survey. Measured at three different time periods, their prevalence increased steadily—especially in adolescents.

Adolescents? I assumed that MG was an adult disease. But when I sign up for a support group on Facebook, I find a post from a mother whose twelve-year-old loves music but cannot muster the energy for band practice; another from a mother whose eleven-year-old cannot even  get through a school day. Then I remember how, during lockdown, I heard young adults protesting, their voices shrill with fear, others’ refusal to distance or mask. “I have,” they said, “an autoimmune condition.” This surprised me at the time, because they were so young and looked perfectly healthy.

Andrew looks perfectly healthy, too—until the exhaustion takes over, and he turns pale and excuses himself to go to bed at 7 p.m. He climbs our steep stairs like a ninety-year-old, pausing at each step, and I listen to his hard, ragged breathing and swipe away tears. I know I will have plenty of time to compose myself before he makes it to the top of the staircase.

•  •  •

Myasthenia gravis. I can now type those words in three seconds; my fingers have memorized their spelling. The computer tells me what to avoid, what will help, who is looking for a cure, how to see a crisis coming. I make lists of the drugs Andrew must avoid and print out wallet cards for him in case of emergency, listing all the garden-variety antibiotics he must never, ever take, because weirdly, they worsen MG. As does heat, illness, stress, exhaustion….

Who wants a whiny litany about a disease outside their experience? But in a time of increased illness, contagion, and hazard, sharing experience can help, right? Or maybe this is just self-indulgent. Because I share everything with everyone—including strangers, including you right now—I am the one getting all the concerned sympathy and offers of help. Andrew keeps his misery to himself; even I have to pry its fluctuations from him. Which I must, because I am trying to manage the growing list of medicines and dosages and renewals and pester his doctors with questions he would not bother to ask.

Despite all my fussing, he manages to take double the prescribed dose of prednisone for a solid week. Then he mixes up the long-acting and short-acting insulin pens and is too tired to care. Finally, exasperated and worried, I snap at him to get hold of this. He starts tracking his own readings, weight, and symptoms, and I, Miss Bossypants, sneak peeks at the notebook.

When the prednisone dose ramps up, the double vision disappears—the first relief. But the fatigue worsens, and soon he is thirsty all the time, peeing three times a night (at age fifty-nine), exhausted, and dropping more weight every week. I see him naked and think of the AIDS patients I wrote about in the ’80s, back when they had no choice but to die.

That is melodramatic; he is not dying. But after dropping to a healthy 175 pounds, he proceeds to lose another twenty in six weeks’ time. His muscles are no longer visible, and his skin hangs loose; he cannot sit on our comfy couch without another cushion beneath his now nonexistent tush.

Steroids make you thirsty and increase the frequency of urination, I read, and since he needs to stay at the high dose for a while before they start lowering it, nobody seems alarmed. So we keep on—until I cannot bear it any longer, and I press his primary-care doc with more details, and he has us check Andrew’s blood sugar levels. They are often in the 300s, sometimes spiking into the 400s before plummeting way too low, and the doctor murmurs something ominous about burning up muscle and puts Andrew on metformin and a long-acting daily insulin injection. Even that is not enough, so he adds glipizide and short-acting insulin injections, jabbed into his belly before every meal.

Now Andrew is depressed—frustrated and deep-down angry. Of course he is, I think; who wants an autoimmune diagnosis? It takes me way too long to realize I am wrong: what is bothering him is not the myasthenia. It is the maddening fact that just last year, after giving up his beloved donuts and sugary coffee, exercising until he was stronger than he had ever been, and dropping twenty-five pounds to avoid diabetes—specifically to avoid having to give himself shots in the stomach—he now has diabetes anyway. Steroid-induced and swinging wildly out of control, requiring four shots in the stomach every day. All that hard work and grim determination was for naught.

Not that he ever thought life was fair, but this is a bad cosmic joke.

•  •  •

Many people with MG have an overactive thymus gland, one that whispers bad instructions to developing immune cells. Why not pluck it out? Before robotics made it possible to avoid breaking open the sternum, these surgeries were intense and risky. Also, we had underestimated the thymus. An odd little organ, not to be confused with the thyroid, it creates our immune system when we are tiny then shrinks over time, its cells changing to fat. Until a pivotal study was published in 1997, doctors figured it was obsolete, inert, as useless as an appendix. Not true. It is wizened but still lively, and in Andrew’s case, it might be making the MG a whole lot worse.

A surgeon draws us the usual scribbly sketch and calmly explains that the fat around the thymus adheres to the surface of the heart. Because Andrew has had pericarditis, the fat might not peel off easily. That means they will have to open the sternum and cut off the fat. I blanch. They will be near the lungs, slicing above the heart, dodging major arteries…. The surgeon will not know if he can do this robotically, with small incisions and the sternum intact, until he “gets in there.” And we will not know for at least six months if the surgery has made a difference.

“Let’s do it,” says my husband.

•  •  •

First, we have to get through the summer. New to doing all the yard work, I wade into a stand of tall grasses and weedy trees and wind up with a tick burrowed in my scalp. Me, who hikes every week and has never had a tick. One hour in my own backyard and I am feverish and achy, my lymph nodes swollen like a happy squirrel’s cheeks. I have, the doctor informs me, Lyme disease.

After a long course of the antibiotics Andrew cannot take and a reminder to avoid the sun, I sweat through summer in long pants and a big hat, like I am pretending to be on safari in Kenya. Driving Andrew up to the historic site where he is working, then home to work, then back to get him, I log four hours a day on the road, another hour watering all the flowers and herbs through a drought, another walking the dog and scratch-cooking healthy food because the convenient stuff that claims to be healthy is not (read the damned labels)—and then there is laundry and cleaning and grocery shopping and home repairs and, oh yeah, my fulltime job. The math does not even add up; I am using more hours than a day has.

At first, this overwhelms me. Then the new routine settles into my bones, and with it comes an unexpected calm. For six decades, I did all I could to avoid predictable routines and mundane, repetitive tasks. Now I find comfort in always knowing what to do next and always having something to do. These tasks are simple, and my movements acquire a precise economy and grace, flowing with no resistance. I even do little extra chores I normally would have put off, because now I am just doing, not stalling or overthinking or toying with competing pleasures. It is weirdly peaceful, living this way. No choices, no dithering. For the first time, I see the appeal of a tightly scheduled, rote life.

By midsummer, my muscles harden, because I can no longer wait for Andrew to dig or haul or carry heavy bags of potting soil and kibble. With a Sharpie, I write “Chain Saw” on the tool so I can tell it from the hedge trimmer, and after it pops its battery out and spits off its chain, I discover that I need to feed it oil. Andrew watches my Lucille Ball goofs and makes a visible effort not to raise an eyebrow. He is resigned to the fact that his beloved plants are no longer receiving his expert care (I hurriedly compost the two I have killed) and the laundry is now hurled through machines and slung onto hangers without his meticulous patience.

Driving Mr. Daisy back and forth, I get a well-deserved $178 speeding ticket. Both cars sicken and need expensive repairs; we need new garage doors; a sewage smell fills our cabinets; mice move in. Why do small catastrophes pop up like puppies in times of larger challenge? Our domestic peace is under assault. So is the peace in Gaza, Israel, and Ukraine, not to mention our own once-civil society. But instead of giving me perspective, that only further unsettles me. As though the world should have considered my emotional state before erupting.

I ignore the crises and march along with the Routine. Which stays smooth—until the morning I cannot find my phone. I race around, crazed, remember to call it, hear one strangled ring and nothing more, check every other logical place—and find it in the refrigerator. A week later, I leave the car keys hanging on the hook in the ladies’ room of the historic site—and realize this only after the site has closed. Sprinting to the back, I manage to stop the last person who has keys, and she disables the alarm and lets me sheepishly retrieve mine.

As I said, smooth.

•  •  •

By fall, we are both exhausted. Even the dog tries to stay in bed when the alarm goes off. “Are you taking care of yourself?” friends ask, and I assure them that I am. I binge Emily in Paris late at night, letting the day’s cares unspool. I chew gummies like they are jelly beans and buy myself prosecco and camembert and French bread, indifferent to the accumulating pounds. At first I think I am unconsciously compensating for Andrew’s weight loss. Then I remember that carbs raise serotonin: these bits of decadence are not only boosting energy but also soothing my fears.

It bothers Andrew to see me trying to do everything. It bothers me to feel responsible for everything. On his good days, I try to solicit input: “Do you think it’s worth the money to put an actual ceiling in that closet instead of cardboard?”—and he just says, “Whatever you want, honey.” Though he has often said that in the past, giving me carte blanche by way of generosity rather than abdication, now it feels…lonely. So does being the one to monitor everything: meds, heat (bad for MG), stress, blood sugar, doctor’s appointments, food ingredients…. This is the multitasking mothers do automatically, a nurturing I have always admired and known I could never pull off. How many warmed baby bottles would have wound up in the fridge?

There are books about big grief, about being widowed or receiving your own dreadful diagnosis. But where is the small wisdom for times when you are just tired, sad for someone you love, and filled with niggling anxiety? I am awkward in this new role. Instead of remaining a loving wife, I am overdoing it, turning into a nursemaid and a nag. Why worry myself sick when we are still basically okay, and privileged, and overall lucky? At the hospital, I see a man holding the hand of a thin, bald woman, her smile worn and trembly, and hate my selfish self.

Yet still I kvetch. As in every other crisis, it is adjusting to it that is hardest. For me, the biggest adjustment is the silence. Andrew needs the long drives to catch more sleep; he has no energy to chat about the mice scrabbling inside the bedroom wall or the snowfall inside the overpacked freezer or the cute thing the dog did yesterday. Unspoken, my words vibrate like a hyperactive kindergartener at nap time. How I used to babble, I think. Funny, how little really needs to be said.

This is our contemplative summer, as tightly ordered and quiet as a Benedictine monastery. But if we are silent and peaceful with each other nearly all of the time, does a channel close? I can feel the silt filling in, narrowing the passage. Besides, I was not made to be a monk. In long, busy days alone—no time for friends—I talk aloud. Not only to myself, which I have always done, but to the plants as I water them, and then to objects as I use them, conversing about the batter with the blender and asking the contour sheet where its bottom corner is. Life, for me, has always been one long and varied conversation, and I need more partners.

Also more time. On the morning and evening drives, spacious with silence, ideas come for stories, and I jot them on a Post-it pad stuck to the dash. First, a word or two. Soon, whole sentences.

“What in hell can you possibly be writing all the time?” my safety-conscious husband finally exclaims. And yes, I already know that scribbling is not the wisest thing to do on the highway, but I explode anyway: How else am I supposed to get my work done?

Luckily for our marriage, he does not crumple. Instead, he teases me out of my irrational rage, dryly pointing out possible consequences of my scribbling in ways so ludicrous, I am in tears laughing. Which, I point out, is even less safe for driving.

But his sense of humor is back, and something deep inside me unclenches.

•  •  •

No more steroids; they must be stopped for as long as possible before the surgery. Also, Andrew must be symptom-free, which sounds like a Catch-22 until the doctor says that if he does develop serious symptoms, they will just hospitalize him in advance.

Without the prednisone, his blood sugar stops spiking high, a second relief. Until, a few weeks later, it starts plummeting, sending off alarms once or twice a night. Miss Bossypants is near unbearable: Don’t you dare ignore it! Get up right now and chew four Starburst and wait fifteen minutes. Now you need complex carbs, eat the peanut butter crackers. What does it say now? Good. So get back up and brush your teeth or the Starburst will rot them….

He topples back into deep, exhausted sleep. I lie awake, jangled by the alarms and glum about a future stripped of pleasure. What about all that travel we were going to do? This was supposed to be our carefree decade! Andrew does not crave fun the way I do; he is upset by the prospect of being less useful to the world. Me, I feel cheated of Paris. Trieste. Bhutan.

Two weeks later, the middle-of-the-night alarms lessen, and he starts feeling better, and all that self-pity goes away. I am happy just to plan a weekend getaway in Indiana. Sometimes we make our dreams big to exaggerate our deprivation.

•  •  •

Inflammation—that big word that sums up everything our body does to react to possible harm—flares at the muscle membrane in myasthenia gravis. Inflammatory proteins rise and inflammatory cells pump out cytokines, sending the immune response in the wrong direction. Inflammation is supposed to be healing and restorative, cycling as needed. But when it gets stuck in the “on” position, bodies pay all sorts of prices.

Ours is an inflamed world, shot through with inflammatory rhetoric, inflammatory toxins, inflammatory diseases. Did Andrew get MG because he rode his bike behind the mosquito-sprayer truck as a kid, pedaling as fast as he could and sucking in the chemicals? Or because his parents smoked, or because he is immaculately clean and doesn’t leave enough germs, or because of that horrid respiratory infection he had a few years back? Because he was stressed beyond belief last fall, working a tough job and spending the rest of his time helping a depressed, self-sabotaging friend with multiple disabilities and problems? Because he gets so angry and frustrated by the political landscape, social injustice, and environmental devastation?

Inflammatory: tending to excite anger, disorder, or tumult. To one degree or another, a definition of modern life.

•  •  •

In the days before the surgery, Andrew is resolute, and I am a wreck. I was the one who found the research and brought it up to the neurologist like I was angling for an A in class. Now a surgeon is going to slice up my husband’s innards. Unnecessarily. Just because we asked him to. Even though “the exact mechanism underlying the steps of immune activation in the thymus, contributed by infection and inflammation, is incompletely understood.”

In 75 percent of cases, a thymectomy helps at least a little. The risk of complications or death is 14 percent. We are playing the odds. To avoid thinking about that, I start trimming raw chicken thighs for dinner. Usually I buy the pricier cleaned-up stuff, because all that yellowish fat and sticky membrane makes me gag, but this time, a sale distracted me. I find myself peeling back a huge blanket of fat, and suddenly I am Andrew’s surgeon, thrilled by how easy it is. Human flesh is not so different. This is how it could go.

A friend packs the best hospital care package I have ever seen: a super-soft throw because hospital blankets are as thin as sheets, chewing gum to erase the vile taste of the antibacterial mouthwash he has to swallow, a vending machine’s worth of snacks to get me through the eleven hours of worry until he is finally back in his room ….

On the eve, we set the alarm for 3:30 a.m. Andrew bathes for the second time in sterile goo, and we are off. Barnes Hospital is, as usual, under construction, with a humblebrag sign in the parking garage: “Please excuse our dust.” This hospital, a bastion of world-class medical care, sprawls like an airport and is, at dawn, as eerily quiet. We are taken up to pre-surgery in a group, with patients dropped off at various O.R. antechambers as though a shuttlebus is taking us to our various airlines.

In the waiting room, giant electronic boards indicate whether each surgery has begun, is in progress, is finishing or in recovery. Surgical nurses are to call us every two hours with updates. I head for the café area, where waiting families have slid into that party atmosphere healthy people whip up to reassure themselves in the presence of illness or death.

For two hours, I manage to distract myself with work. Then, in a sudden blurt of panic, I open my phone and position it near my right hand so I can grab it fast. Was I too cocky, mentally drafting the relieved texts I would send all our friends? I glance over at the little soundproofed rooms with frosted glass doors, the rooms we all dread. Without being told, my brain starts composing sadder reports: There was some complication…not as easy as they hoped… I stop long enough to hyperventilate. My lower back spasms. At least Andrew gets to be unconscious, I think uncharitably. Why do they not pass out sedatives in the waiting room?

The operation was scheduled for 7:30, and the actual procedure began around 8. Or 8:30? Why did I not jot down the time of that first call? Now it is 10, surely time to be done. Unless they had to open his sternum—that would add, what, another hour? These are the mental games I thought I was grownup enough to avoid. Instead, logic and trust gone, I stare at my phone. Maybe the surgical nurse had a rough night and forgot to call. I will forgive him the minute he remembers.

At 10:04, the phone rings. I grab for it, answer breathlessly—and the connection breaks. Fingers fumbling, I try to call back; it rings and rings. Andrew has coded on the table, I am sure of it.

Long minutes later, the nurse calls and apologizes; somebody called him needing something. The surgery went as planned; they were able to do it robotically after all; they are just now finishing. I thank him like I just won a trip around the world.

Thirty happy texts later, I try to work again. My mind is clear, and the time ticks away painlessly. I chat with a man who brought his wife in at the same ungodly early hour we arrived. She has finished her first surgery and they are about to start her second, which will take six hours. The thought makes me lightheaded. How could I have worried about a thymectomy?

Four hours and a panic attack later, the phone rings again. Turns out they had to give my sleepy husband Narcan to bring him out of anesthesia. As a result, they dialed back on the pain meds. Now, caught in a twilight he will not remember, he keeps trying to lift himself away from the chest tube. I see the bright blood rushing through that clear tube and wish I could faint. It is a responsibility, being the healthy one.

•  •  •

The usual imposition of post-surgery rules, then their gradual, glorious lifting. Now you can eat anything you like…. Now you can bathe…. Now you can lift things and drive. So much we take for granted, given back to us with a bow on top.

All those boring, homey routines that seemed so mundane? I cannot wait to resume them. You create these little rituals together, small shared pleasures or lightened chores that shape your common life, and then they dissolve abruptly, and you reel with vertigo.

I am eager to be cozy and enjoy the mending. Andrew is abjectly miserable. “Is it the incision?” I ask nervously. No, he says, he is having terrible sinus headaches. I let out a long exhale. How can this make him more miserable than major surgery? Because there is no longer a need to be stalwart, I realize. Nothing is scary, so you need mount no defense. Paper cuts surprise you with sharp pain, and garden variety misery can drag you down unopposed.

“What now?” our friends keep asking. I look at them blankly. Now, we just wait. Either this helped or it did not, and we will not know for at least six months. Andrew returns to his teaching and history gigs in a week—too soon, warns Miss Bossypants, who chauffeurs him and prays he will not overdo it. A fine line, faintly penciled, runs between work that helps you, mind and body, by giving you a sense of purpose and distracting you from misery, and work that wears you out and leaves you more vulnerable. I keep squinting to see that line; it wiggles and grows faint at times, then darkens, and then alarms flash and it is too late, the damage is done.

We switch places in bed: he will have pain for about three months, and the various new holes in his body are all on the left side. A marriage must be flexible. One is strong while the other flags, then you meet in the middle and run parallel for a while, then the music stops and you switch, fast as a game of musical chairs.

Slowly, steadily, Andrew gets better. But what if he had not? How do you know when to create new, more manageable rituals? How do you know whether to stick with old dreams or find new; whether to lean hard into total recovery or make your peace ahead of time with the worst that could come?

At his next physical therapy appointment, he has a question for kind, practical Kate: “The neurologist said I should listen to my body. The surgeon said the same thing, and now you. Well, my body was telling me I was exhausted at about four minutes, but I managed six and the pain went away. How do I know when to listen?”

“Let that first sign from your body be a yellow flag, telling you to be alert,” she suggests, “but not yet a red flag telling you to stop.”

This makes sense. The first flag comes more from the mind, reacting with fear to some small sign from the body, than from the body itself. If you relax or distract your mind and keep going, the pain often dissipates, or you get a second wind. But if part of you does not stay vigilant, you can push so hard that you forget your body altogether and live in your head, which just wants to finish what it has begun, no matter the cost.

At the end of the session, Kate asks about goals, and Andrew talks about how fit he was a year ago. “I know I’ll never be there again, but as close to that as possible?” That is what I want for our life, too. We took the vow, in sickness and in health, and we nursed each other through flu and small, pesky cancers. But we built a life predicated upon—contingent upon—mutual health.

Should we be reinventing that life altogether, rather than trying to approximate? I see no good reason to do so. Not yet at least. If we reach a time when the modified goal is unattainable, we will rethink, find softer, smaller pleasures together. Right now, Kate is nodding in approval, and the challenge looks manageable. Closer every day.