It was in Suleika Jaouad’s searing account of her battle with leukemia that I first encountered Susan Sontag’s words on health and sickness: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Jaouad was in her twenties, and fought through four years of chemotherapy and bone marrow transplants before reaching remission and asking herself that unexpected question, “How do I live again?” The title of her book is, aptly enough, Between Two Kingdoms. Her story has stayed with me since, but it was Sontag’s depiction of one of the most fundamental human dichotomies that continued to resonate most. I have not experienced a face-off with a potentially terminal illness such as leukemia. My hardest journey has been the quest for diagnosis, the search for some key to unlock a treatment for persistent pain. As I mapped her words over my own experience with chronic illness, I began to wonder if there was another way to understand this dual citizenship she claims we hold.

I had always been more comfortable in my mind than in my body, but in high school I finally found a way to connect to my physicality via the popular and slightly insane world of CrossFit. At the gym, I explored and enjoyed the variety of the workouts, always different enough to keep things interesting. For the first time, I liked how it felt to be in my body. I remember running up a hill and feeling my muscles’ strength, knowing I was nowhere near exhaustion.

However, as with others who jumped into the CrossFit craze, somewhere along the way I pushed myself too hard. I began to experience tendonitis in my left arm. I laid off, rested, came back carefully, but by my senior year of high school, it returned with an inexplicable vengeance. Suddenly both arms screamed with a combination of fiery tendon inflammation and icy nerve pain, from the base of my skull down into my fingertips. I radically reduced my workouts, but instead of abating as it had previously, it grew worse. Soon I wasn’t able to type without extreme pain. I could rate a day’s direness by how much it hurt to pick up my toothbrush in the morning. Somehow, I staggered across the finish line of high school, a milestone which now felt like a miracle. I took a deferral from college, and spent two gap years trying to uncover the sources of and solutions to this relentless agony.

Karenina Fabrizzi, Maximilian, oil on paper, acrylic, ink, oil pastel and gold leaf, 2022. All artwork by Karenina Fabrizzi. Used by permission.

In her essay “On Being Ill,” Virginia Woolf describes how “the world has changed its shape; the tools of business grown remote; the sounds of festival … heard across far fields.” I entered into an eerie unreality, as if a veil now hung between me and the world, a world I still inhabited but from some surreal distance. Every little thing became a costly calculation: if I play this card game, my hands will be too sore to chop up veggies for dinner. If I carry this backpack, my neck will not allow me to look at a screen tomorrow. Am I unable to go to college because I spent too long hunched over my phone? Guilt threaded itself into every sensation of pain. If only I had had more restraint, stayed more still, did even less …

It has been eight years. In some ways not much has changed, and everything has changed. I improved after the first few years, and then plateaued at what I have been forced to admit is my new normal. I have learned to adapt, to manage. I use dictation software, an ergonomic mouse, ice packs, stretching, all the little concessions one has to make when pain is a threat with every movement. By God’s grace and disability accommodations, I graduated from college. By God’s grace and a supportive organization, I work a full-time job. By God’s grace and the most wonderful of friends, I make it through the daily chores necessary for an independent life.

I have had all the nerve tests, blood tests, mobility tests; meetings with arm specialists, hand specialists, neck specialists, chiropractors, physical therapists, sports medicine experts, and acupuncturists. I’ve been told that all I need to do is build up some muscle, or that they can’t help me unless the pain gets worse. Doctors have suggested a host of diagnoses including thoracic outlet syndrome, but diagnostic tests have been inconclusive. The pain ebbs and flows like the tides, except there is no regular chart to plan around.

Now I live in a sort of in-between. I function well enough that it surprises people when I have to say, “I’m sorry, I can’t do that,” or, “Actually, I have this thing …” From my Instagram stories and morning routine, it seems I am living an uninhibited, “normal” life. The surprise I still feel at this impression is proof that it is not the case.

My not-wellness is more obvious other times, like when my gallant friends carry my backpack, when I turn down invitations to co-work in a coffee shop because I don’t want to dictate my thoughts for all to hear, or when I look at the mothers in my church and wonder how I will ever hold a child on my hip. I feel like those blurred glass windows in bathrooms: still technically a window, letting light in but not clarity of image, warped a little, defined more by what makes it peculiar than where it fits the norm.

It is in this strange uncertainty, both of the practicalities of each day and of how to describe myself, that I have come to think of Susan Sontag’s kingdoms in a different way.

Sontag imagines the kingdom of sickness as a place where “each of us is obliged, at least for a spell, to identify ourselves as citizens,” (emphasis mine). It is a passive, powerless thing to hand in your passport there, as if we are Gallic captives being trundled into Rome against our will. Illness of any kind is often an ambush that strips us of agency, viscerally violating our desires and decisions. No one makes plans to vacation in that kingdom. Healing, ideally, restores us to our preferred homeland, where we hope to harbor for as long as we are allowed.

But what happens when you are not healed, when your pain is not fixed with a surgery or a pill or time? Maybe that’s the backache that never goes away, the mental health diagnosis that makes every day a battle, the autoimmune disease that confines you to your bed – or even the ailment that has been improved by the surgery, the pills, the years, but still flares up to remind you that you are not fully whole. In what kingdom are you then?

Karenina Fabrizzi, Heart, oil on paper, acrylic, ink, oil pastel and gold leaf, 2021. 

Some might assume this means you are simply and sadly a citizen of the kingdom of sickness forever, a permanent expat. But for those who have lived with the ups and downs of a chronic condition, the unpredictable swings, the experience is more akin to forever making a border crossing and less like claiming stable citizenship. What if there’s another way to see these kingdoms, a way that helps explain and hopefully provide relief for these less easily categorized conditions? I propose we see them not as static states of being – either you are healthy or you are sick – but rather as guidebooks, mindsets, lenses with which to see the world. The constitution, laws, and social customs of the kingdom of the healthy are different from the constitution and customs of the kingdom of the sick, and sometimes, regardless of where we would graph our well-being on a chart, we need to consciously pick which kingdom’s laws should guide our actions.

First there is the kingdom of health. The kingdom of root causes, experimental treatments. On the streets, the mood is: Absolutely not, we will not give in, what can we do to change this? Its industry is problem-solving, and its weapon is perseverance. Its inhabitants are keen-eyed in their search for what is wrong and unwavering in their quest to make it right. They stretch out their hands to take hold of the next promise of hope, no matter how many have failed before. Their anthem is: Keep trying. It can get better.

Then there is the kingdom of sickness. The kingdom that confines you to bed, or to hospice care. In this land, you hear people say, This is what it is, what can we do to make it bearable? Its economy is built on acceptance, and its tool of choice is gratitude. Its inhabitants focus on what is already going right, picking out the treasure amidst the trash. They rest, and recount all the unexpected blessings to be gained in the realm of imperfection. Their anthem is: There is already goodness here. Keep looking.

The most important thing, the most hopeful thing, about these kingdoms, seen this way, is that they offer us a choice: Which kingdom will I inhabit today? As with any culture shock, it takes time and effort to adapt one’s mind to the distinct perspective of each kingdom, but intentional border crossings are possible. When I step into the other kingdom, the world inverts, like an hourglass flipping. Things grate, then fall into place. Suddenly there is a new way to think, to see, to be. It is the difference between making a to-do list and making a thank-you list. They require very different mental states and catalyze different emotions, but both are needed.

Here is what citizenship in these two kingdoms has looked like for me:

Last summer, I was operating in the kingdom of sickness, focused on what I could do, not what I couldn’t. I was in the “managing” phase of my chronic pain. I had figured out these techniques to get me through college, and I was using them at work. When people asked me how I was doing, I said that I was so thankful that I could handle work, that it was a gift beyond what I’d hoped for.

That was true, and good. The gratitude kept me going when the pain would flare up frighteningly, or when I was discouraged that I couldn’t carry groceries, or type on my computer, or sleep for more than an hour without being wakened by discomfort. But as fall approached, I started to feel stagnant, restless, ready to do more than just get by. I knew it might be time to go back to the kingdom of health. I had good insurance through work, a stable job and friend group, and emotional energy to spend on getting answers.

Karenina Fabrizzi, From Fear to Love / Heart 01, oil on canvas, acrylic, ink, oil pastel and gold leaf, 2022. 

Mentally I packed my bags and stepped back into the kingdom of health. I made an appointment with my primary care doctor, explained the saga, and dutifully followed up with every specialist she recommended. I went to weekly physical therapy and started researching better desk chairs. I paid more attention to what triggered the pain, forcing myself back into problem-solving mode. How could I make it better? What should I stop or start doing? Just being all right was no longer enough. If it was, I was just wasting my time and money with all these doctors.

I had stepped back into the kingdom of health, not because I was any healthier, but because I was operating and making decisions as if health were the norm, something worth pouring time and energy into achieving.

But sometimes the move goes the other direction. Two summers ago, my pain was flaring up and I couldn’t get it to calm down. My family was at the beach for the day, and I sat next to them in a world of my own misery. As I watched all the strong, lithe bodies in the water, I wondered how many minutes of treading water it would take before the pain was so bad that it would impact any later ability to work. I was exhausted from these calculations, the invisible drain of energy too familiar to anyone with a chronic condition. The beach is one of my favorite places in the world, but any joy I normally felt there was quickly seeping away.

Then I had an epiphany: I had overstayed my time in the kingdom of health. For now, there was nothing I could do to fix my situation. Maybe I simply needed to reenter the gates of acceptance.

I remember clearly the mental pivot, as I took a deep breath and looked up at the wide July sky, as blue as hope. I remember finding solace in the sound of the waves, luxuriating in the breeze on my skin. I grabbed a fistful of chips and Oreos, laughing like a kid at the rare freedom of savoring junk food. I made a list in my mind: Thank you that I have such a good family. Thank you that I have the luxury to take a day off work. Thank you for laughter. Thank you that I can see and hear and feel and smell and taste. Thank you that I can walk along the sand. Thank you that I can read. Thank you for whatever minutes I get to spend in the water. They are enough.

And suddenly, they were. Halfway through my mental list, my beach day was transformed. Instead of bitterly reflecting on all I couldn’t do, I felt now that everything was a gift, a superfluous blessing that I had missed in my clenched striving to be better, to have no pain, to fix a thing that simply couldn’t be fixed, not at that moment.

This time I stepped back into the kingdom of sickness, not because I was any sicker than the moment before, but because I was operating as if sickness were the norm, and therefore not worth my full attention. It was relegated to static, to background noise, freeing up my attention to something other than what was wrong and how to fix it.

Both kingdoms have gifts to offer. Sometimes we need to get off our butts and fight, and keep on fighting. We need to be discontented, to sound the warning: this is not as it should be, and I have the agency to seek a better way.

And sometimes we need to surrender. We need to release our grasp on our ideals, our expectations, our control, so as to see a new way: the goodness that is already here, in the midst of that which we did not ask for. We need to sink into our limits and find a serenity in them that is not accessible when we are constantly on the hunt for better.

Some people claim you cannot grow without suffering. But I have also seen pain break noble spirits. It’s not always inversely correlated. Neither is it always in tandem, a one-to-one positive increase in each. But I eschew the x-y axis, the linear graphs. This life is a dance, one foot in and one foot out of these two kingdoms, or else poised perfectly in between, sometimes enjoying a pirouette in one, sometimes hunched over in the other, being spun here and there, never sure where the next measure of music will take you. To stay stuck in either kingdom is not a dance; it is rigor mortis. Gracefulness is the ability to move fluidly, and that, I believe, is what we need: the grace to dance with ease between these two perspectives that together, in a supra-logical, nonlinear, deeply human way move us closer to ultimate wholeness and goodness and glory.

Taking a longer view, we talk of the “now and not yet kingdom,” the kingdom that encompasses all other kingdoms, including these societies of sickness and health. We see the “now” when our efforts to find healing are blessedly successful – and we also see it when we experience inexplicable peace in the midst of ongoing pain. And through it all we cling to the “not yet,” the promised wholeness that has already planted seeds in our hearts – no more tears, no more pain, rest from the battle – seeds that are waiting to bloom in the final and everlasting dawn. Shalom, wholeness – we are promised this, one day. Referencing our resurrected bodies, Paul affirms, “For we were saved in this hope” (Rom. 8:24).

Until that time, we are graced with tools to endure the “not yets,” one of which is this mindset shift that resists long-term citizenship in only one realm when there are gifts in each.

At the end of the day, who of us is ever truly healthy? What is the threshold to claiming wellness? And yet, how helpful is it to only ever identify as sick? What is the line between accepting reality and identifying too strongly with victimhood? Maybe we are all just human, at various stages of brokenness, and the idea of the twin kingdoms of health and sickness can be a guide for navigating those complexities.

What does this all mean for us tomorrow morning when we wake with unresolved pain? In Rilke’s words, “Let everything happen to you: beauty and terror.” God in his grace has given us many tools to handle this life, and two of these tools are the particular mindsets of these two distinct kingdoms. We each hold a passport to both. When we feel stuck or stagnant, desperate or weary, perhaps it’s time to visit the place we left. In the midst of these endless exiles between kingdoms, we need not fear – God is King of both.