Recovery Reflections: What Illness Taught Me This Time

Here are twelve somewhat unrelated lessons or ideas I've been musing on during the past month, when I've been out of work due to a chronic illness flare.

1 - There is a difference between resting for productivity and resting for healing.

Resting for productivity—the kind of rest that garners a terse, grudging approval from our late-stage capitalist culture—is stolen in tiny bits and pieces; the goal is to restore the body-machine to a functional capacity so the work can continue. It’s a thin kind of rest, a starvation kind of rest, quickly snatched, quickly spent, all too quickly needed again. Resting for healing, however—to have the audacity to rest for healing takes so much courage, so much tenderness with ourselves, so much faith that everyone and everything will be okay without us for a little while. It’s a languorous, luxuriating rest; it’s rest as a spiritual practice; it’s rest that brazenly claims an intrinsic human worth unconnected to productivity, service, or success.

It is so hard to rest past the first moment of feeling a tiny bit better, to rest long enough to actually heal. But maybe the uncomfortable grace of severe illness is how it forces us to engage with rest that heals.*

*In the name of mercy over shame, I want to acknowledge a bitter truth: this kind of rest requires a level of financial privilege few of us have, and our current political system is actively stripping away the already-meager social safety nets that allow for our humanness. How can they not see that it’s sheer cruelty, to punish people for poverty and sickness and hunger, as if these struggles are moral failings, when they are the ones who perpetuate the unjust system that creates poverty and sickness and hunger? (Perhaps they do see. Perhaps this is their own poverty, their own sickness—a poverty of heart and a sickness of soul. I feel caught between two prayers: “Forgive them; they know not what they do,” and “Strike all my enemies on the cheek; break the teeth of the wicked.”)

2 - There is a strange kindness in being this sick.

One of the only ways to really find out how much people care about you is to become so sick that you’re basically helpless. Plenty of people are deeply loved by their communities…but not all of them get to tangibly experience it. It’s an odd kind of privilege. Illness is brutally hard…but I’ve been reminded of something I realized when I was seventeen: that without pain, none of us would ever get to experience the gift of comfort.

Which is why I think there must still be weeping in paradise.

3 - Asking for help gets easier with practice.

I have been afraid of asking for help for seventeen years, ever since a misguided psychiatrist diagnosed my medical condition as hysteria and told me I was making it up to get attention. From that moment on, receiving help felt like admitting she was right—and just as pleasure becomes tainted with shame for sexual abuse survivors, when receiving help felt good, it filled me with self-disgust. I cannot count the number of times my resistance to asking for help ended up creating a situation where I needed even more help than if I’d just asked in the first place. Each time this happened, I learned the wrong lesson: buried in shame at having been a burden, I only grew more terrified of asking for help. And so the cycle repeated and repeated and repeated.

But finding the courage to ask for help is, for me, perhaps a more profound healing than even physical recovery. It isn’t that I’ve evolved or somehow become enlightened; it’s that having a child is a forceful incentive for growth. I am a “we” now, and we need help. My daughter doesn’t deserve to suffer for my pride and fear, and I will not transmit my pain around this. I will not teach her that she has to bear trials on her own. In this, as in so much else, she is healing me.

4 - I don’t know how anyone survives without a church.

Because of my church, I barely had to ask, and immediately, there were people to bring meals, people to scrub my toilets and clean my stove, people to play with my child, people to offer me rides when I couldn’t drive, people to pitch in money to cover a babysitter. How does anyone face life without a village like this?

Religion has caused at least as much harm as good in this world, and religious communities can be messy. But I find it striking that secular humanism has never been able to replicate, in scale, structure, or functionality, the kind of interdependent, interlocking, multi-generational networks of relationship found inside formal religious communities.

5 - For the chronically ill, experiences of the American healthcare system are inherently traumatic.

Multisystemic illnesses are difficult to diagnose, and even more difficult to treat, in a system of isolated specialties where doctors do not have enough time to consult with one another. Roughly 80% of chronic illness patients are women; however, women were not included in medical research until 1993, and still only account for 40% of participants in clinical trials. Lest anyone think that we have moved beyond the belief in the “hysterical woman,” rates of misdiagnosis, delayed diagnosis, dismissing illness symptoms as purely psychological, and failure to adequately treat medical symptoms are exponentially higher in women.

The statistics do nothing to capture the true emotional, financial, and physical toll. I do not know a single female chronic illness patient who has not felt abused, neglected, or gaslit by her medical providers. In many cases, the level of trauma can match that of sexual assault, an almost-fatal accident, or narcissistic abuse. I do not know how to quantify the impact of medical trauma, because of its ruthless combination of patriarchal oppression, life-threatening experiences, abuse of power, neglect, psychological manipulation, and physical violation.

6 - Recovery is not linear.

It is a spiral, a journey that circles back on itself, old lessons repeating and new gains slipping away. You will spend more time exploring the heights and depths of your experience than you will traveling forward. You will grow dizzy, frustrated, and bored. You will learn the contours of patience, the rhythms of rest; you will learn them, forget them, and then learn them again.

7 - Womanhood is the antithesis of rest.

I learned this as a girl, helping my mother cook dinner while my brothers played video games, and watching my mother plan the week’s assignments for her homeschooled children on Sunday afternoons while my father watched football. I learned it as a young woman, joining the wives in the kitchen at church gatherings while the men sat at tables discussing their careers, theology, and hunting. I mastered it as a wife and mother, juggling a baby in one hand and a spatula in the other, shouldering the mental load of childrearing, from making doctors appointments and packing the diaper bag to keeping track of clothing sizes and daycare closure dates. I’ve been prepared for these roles since I was a child; most boys don't get the same on-the-job training.*

I can’t help but wonder how this intrinsic quality of womanhood contributes to the massively higher rates of anxiety, depression, autoimmune conditions, and chronic pain in women when compared to their male peers. There are many factors, from basic biology to higher rates of inflammation-causing childhood trauma (girls are uniquely vulnerability to abuse in patriarchal societies). But the inability to rest surely contributes. We get sick because we never slow down, and we stay sick because we are not allowed to rest. And while we are constantly shamed for our failure to prioritize our own self-care, and sold expensive solutions from a trillion-dollar self-care industry that overwhelmingly targets women, the truth is that this is a feature, not a flaw, of a system designed to burden women with the unpaid and invisible labor required to keep both family and society functioning.

*This is not to imply that men don't work hard. Men work tremendously hard, and most men I've known are selfless and dedicated in their support of their families. This is merely a reflection that women engage in a lot of work that gets done in the background, especially the invisible mental labor that doesn't have "off" hours.

8 - I am my body; my body is my Self.

Everything I experience—all my joy, every heartache, each moment of fear or strain, all the times I feel gratitude—it all happens in my body. Even the moments that feel the most transcendent, the most spiritual, are still a mixture of breath and heartbeat and firing synapse and prickling skin.

It’s tempting, in chronic illness, to view my body as the enemy, as a damaged vessel that has the Real Me trapped inside it. But when I am anchored in embodied self-compassion, that perspective shifts: my body and I are suffering together, as loving companions, each doing what we can to help each other, and there is no enemy at all. My body’s signals of fatigue and discomfort are loving messages—“Be careful. You need to rest. Slow down. I’m here for you.” The electrolytes I drink and the moments I take to lie down and close my eyes are acts of kindness for the most faithful and long-suffering friend I will ever have—“Okay, we’re in this together. I’ll take care of you. I’ve got you.”

This partnership is the work of healing. And seen this way, healing is love.

9 - I no longer say, “Everything happens for a reason.”

That phrase, dripping with harsh Calvinist theology, is a cruel thing to utter to someone in pain. But I do believe that, in everything, there is reason, and out of everything, something meaningful arises. Call it the butterfly effect; call it divine will; call it luck; call it the universe intervening. The words don’t matter. Our lives are interlocking webs of a million tiny choices, a billion chance encounters, a trillion alchemical reactions. Cut one thread, and the whole thing could warp.

We don’t often get a glimpse of how else our stories might have gone. Sometimes, we can look back, years later, and see the relationships that would not have been, the children never born, the lives never touched, had we moved to that city instead of this one or pursued a different career. But I think it’s likely that the smallest choices—who you sit next to on the first day of class; what route you drive to work—make just as much of an impact. And perhaps the events that are not choices at all—the weather that cancels your flight; the book you grab at the library when your hold hasn’t come in yet; the illness that keeps you home one day—are some higher power’s hand on the tiller, steering us toward our destiny.

The other day, my daughter dragged her feet getting ready for school, and because I wasn’t rushing to work, I let us run late. On our way, we passed a fresh accident—bits of metal strewn on the pavement, four cars smashed to pieces. If I had been well, we would have been on time, but those fifteen minutes kept us safe.

So when it’s hard and you don’t understand, just remember, it’s okay. There is more at work than you can see.

10 - I think we all feel a little like a child when we’re sick.

And blessed are the children who have been rocked, soothed, and snuggled enough, for theirs is the ability to receive care without resistance, even after they’ve grown up.

11 - Illness has created room for me to start learning about stillness.

Without an ability to do chores or clean the kitchen, without preparations for the next work day, without new dance steps to rehearse in my head, I have found a tiny little empty space, and I am trying not to fill it. In my last bout of illness, eight years ago, I stayed busy. Very busy—I wrote two novels in six weeks. This time, I am leaning into stillness, the utter cessation of activity. But stillness is an intense experience, and I can only handle it in small doses, usually no more than ten minutes of meditation in my closet at the end of the day.

Meditation is tremendously hard work. You have no idea how busy your mind is until you try to still it. Then the clamor, usually no more than background noise, becomes unbearable. I feel like I only manage to hold a true apophatic silence for half a second at a time; as soon as I notice it, it’s gone, replaced by a loud, busy, self-absorbed noticing of my achievement of quietness—which, of course, shatters the very quietness I’m trying to hold.

I’m told that, with practice, you eventually figure it out.

What surprises me, however, is not that I’m terrible at meditating, but that, despite my dismal failures, there is still a kind of grace in it. Each night, I keep returning to kneel in my closet; there is remarkably little resistance. It’s feeding me in some unseen way.

12 - There are many ways to heal.

I think Jesus knew this, when he asked the crowd, “What’s easier to say, ‘your sins are forgiven’ or ‘get up, pick up your mat, and walk’?” Some healing you see, and some you don’t. Some healing you feel, and some takes place outside your awareness. Sometimes, you know when it happens; other times, you only notice it a long time later, when your body does something it couldn’t do before or a familiar trigger doesn’t spark quite so much fear or anger anymore.

The Greek word translated as “salvation” in most New Testaments is sozo. All it actually means is wholeness or wellbeing. This puts a different spin on stuffy old verses, such as “For by grace you have been made well,” or “Whoever calls on the name of the Lord will be made whole,” and turns “Your faith has saved you” into “Your trust has restored wholeness and wellbeing.” Orthodox Christianity has tended to define salvation as purely spiritual, focusing on the narrow interpretation of being spared from Hell (or best-case scenario, being spared from Hell and becoming a better person). But the Gospels depict Jesus offering spiritual wholeness and physical wellbeing as a package deal, inseparable from one another, neither privileged over the other.

He was on to something. Spiritual and physical healing are, in reality, quite hard to separate. (Western medicine has been almost as slow to realize this as the Christians—just from opposite sides.)

The more healing I experience in my life, the more firmly I believe all healing is a miracle. That our bodies can knit themselves back together, that our brains can regenerate and form new neural pathways, that our souls can go back and retrieve young, damaged fragments left behind in the past, that our lives can repair ancestral wounds passed down through the generations—how is that not miraculous?