Multitudes

Susan Sontag wrote that “[i]llness is the night-side of life, a more onerous citizenship. 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.” Between Two Kingdoms, a new memoir by leukemia survivor Suleika Jaouad, takes up Sontag’s formulation to describe her experience of emerging from the kingdom of the sick and trying to live once again in the kingdom of the well.

This Between zone is where I find myself, too. To anyone whose daily business in the land of the well might intersect with mine, I’m sure I appear to belong. I work full time, care for my family and my home, and am regularly out running in my neighborhood. I look normal and healthy. You can’t see that part of my scalp is gone forever, removed to prevent a cancerous lesion from metastasizing, replaced with other skin that doesn’t grow hair or nerves. You can’t see where I was injected over and over again with an experimental vaccine, in another attempt to thwart cancer, poked so many times in the same spot that the fibrous tissue underneath is still indurated and discolored almost a year later. You can’t see the tumors that took hold inside my body, despite everything. You can’t see how modern medication has reprogrammed and amped up my immune cells to exterminate the invaders. You can’t see that battle’s collateral damage, the friendly fire by overzealous immune cells that won’t seem to leave my perfectly healthy eyes alone, making my world look fluid, distorted, and tenuous — just like my efforts to blend in with the healthy.

Things used to seem so much clearer, before I left the land of the well and discovered the other place.

And yet, at least for now, I’m not really in the land of the sick, either. I spent just enough time there to understand what it is, how existence there is different than what I’d always known. The first thing to learn is that many of the currencies of the land of the well are worthless in the land of the sick. There are no top students, award winners, or record holders. There are no certificates or degrees. Even your cold hard cash will only go so far. In the land of the sick, the only thing that really matters about you is this: how hard can you fight to love the life you have left?

When I first learned I had cancer, I was overcome by fear. I saw immediately that fear could make my life miserable even if I was in fact far from death and physically feeling fine. With the doctors already helping me fight off my illness, I concluded that my main job was to fight off fear, to prevent it from stealing my life early. I conceived of fear as my mortal enemy, always lurking, waiting for a chance to ruin my day when I least expected it. This perspective made sense back when I thought I’d merely been kidnapped into the land of the sick briefly but had safely returned “home,” to my familiar healthy existence where medical appointments were rare and I commonly planned out my life several years into the future. It also made sense after I found myself suddenly back in the land of the sick, maybe forever. Who knew how much time I had left, and how could I possibly allow my precious life to be dominated by feelings of terror? I couldn’t, and I wouldn’t.

Here in the Between, though, fear turns out to be more complex. Of course I’m still afraid of dying before my work is done — afraid that maybe the very good news I’ve gotten will turn bad before long, as happens all too frequently for cancer patients. I’m still afraid that, even if a good chunk of time is left on my clock, I’ll never really belong to the land of the well again. I remember the version of myself that was nurtured there, thrived there, and I’m afraid that the “me” I knew for so long might be fading away as I become someone too different, too fast. But looking back toward the land of the sick, now I’m afraid of a new thing. Even though much is lost to shadow in that difficult place, important things also come into focus if you can manage to retain your sense of self. Who and what you love, and who loves you, for example. The insignificant preciousness of your one very own unique life. What it really means to be human.

In the land of the well, these notions struggle to transcend the cliche. In the land of the sick, though, they become so real that you can almost reach out and touch them. Here in the Between, I remember being able to perceive these terrible and beautiful truths, but my apprehension of them is fading like a dream in the light of day. I’m afraid that I’ll forget what I understood when I was sicker. I’m afraid that if I have a chance to set up a new residence in the land of the well, I’ll just end up rebuilding one of those walls that healthy people erect in a vain effort to separate themselves from the other place.

Mike Ryan, head of the World Health Organization’s health emergencies program, recently fielded a question about when we might hope to return to our “normal,” the way things used to be before the COVID-19 pandemic upended our lives. He said: “I don’t want to go back there. It wasn’t a safe place — for our planet, or for social justice or for extremism or for human health.” That’s similar to how I feel now about the land of the well. It looks beautiful, but it’s built on a false and unsustainable foundation. If I try to live there again, won’t I just be setting myself up to be blind-sided again and again whenever I’m forced to remember that we can’t stay healthy forever?

There’s nowhere that I can hide from fear. But maybe that’s just as it should be.

I’ve always loved the Pixar movie Inside Out. The main characters are five emotions that live inside the mind of an 11-year-old girl: Joy, Disgust, Anger, Fear, and Sadness. Although Joy seems to be the ringleader, and perhaps truly is the girl’s raison d’etre, the story is about the purpose of those other, uncomfortable emotions — how they all protect us in their own ways and, just like Joy, help us live our best lives.

Being in the Between has given me space to realize that Fear is not my mortal enemy. She’s me — or, at least, she’s part of me. She loves me more than anything, and all she wants is to protect me from being hurt. When the protector emotions and their priorities take control, though, things can go off the rails.

I’ve already had some experience with this earlier in life, with another emotion, Pride, taking too long a turn with my steering wheel. She not-so-secretly believed she represented my best self, and she got very good at deflecting any other part of me. She always intended to be upbeat, empowering, for my own good of course:

I can achieve anything I want. Why not? Just try and stop me. Throw all the obstacles you want in my path; they don’t matter.

It doesn’t matter if I’m a girl. It doesn’t matter if I’m short or quiet or awkward. It doesn’t matter if I’m different, if I don’t look the part. It doesn’t matter if the odds are not in my favor. It doesn’t matter if I’m tired, or sick, or scared. It doesn’t matter if this is all new and unfamiliar. It doesn’t matter if I already tried and failed. It doesn’t matter if I’m not from around here, if I don’t know a single person in the room. It doesn’t matter if it turns out they don’t like me, if they’re not impressed. It doesn’t matter if they don’t believe in me. It doesn’t matter what they say, what they think. It doesn’t matter if I have to do it alone. It doesn’t matter if it’s uncomfortable, if it’s painful. It doesn’t matter if there isn’t enough time, if I don’t have enough information. It doesn’t matter if I messed up and can’t take it back. It doesn’t matter if I’d have chosen something different than what I got, if this isn’t what I was hoping for, if I’m disappointed. It doesn’t matter how I really feel.

A lot of things don’t matter. Maybe nothing matters.

You see the problem. One emotion declaring herself queen, for our protection, can send us spiraling out of control.

Fear, who has protected me so well for so long, doesn’t want to be queen, would truly rather stay in the background of my consciousness, hasn’t a clue how or where to steer me. But she knows she has one job to do, and she will damn well grab the wheel and start screaming for help if she sees I’m in danger. And with so many very real threats lately, who can blame her for wanting to make sure someone sees them, someone does something, to make sure I’ll be ok?

In the land of the well, Pride would normally dismiss Fear, tell her that whatever she was screaming about didn’t matter, and send her back into the dark. In the land of the sick, Pride totally lost her sense of direction, leaving Fear to set my course as best she could. But here in the Between, Pride — and Joy, too — have a little time to regroup. They recognize Fear as their sister, their ally. They have time to sit with her, put their arms around her, calm her down, and tell her: Thank you, darling, we know. We see the gauntlet of dangers everywhere, too, mixed in with our ambitions and our inspirations and our loves and everything we find beautiful and meaningful. It all matters. We don’t really have a plan to navigate it yet, but we’re going to figure it out, little by little — together.

Current recommendations:

• The stories of other Betweeners. When I allow myself to look with eyes open, I see just how many people who spend time in the land of the well, and may even pass for “normal,” are nevertheless unable to be at home there. Perhaps no one knows that better than families caring for children with disabilities. Jamie Davis Smith, raising a daughter with complex special needs, wrote for KCET about how, even with two white-collar salaries, her family was unable to pay for the care necessary for her maturing child to live a life of dignity.

• “‘Oh, We’re Still In This.’ The Pandemic Wall is Here.” By Maura Judkis in The Washington Post. I felt like I reached some sort of limit in January, despite enjoying significant protections against the various hardships of COVID-19. I didn’t realize everyone else was feeling the same way.

• Sarah Blondin on the Insight Timer meditation app. I’ve been practicing meditation to calm my fears and also the restlessness caused by hitting the above-mentioned pandemic wall. I find myself unable to engage with most guided meditation, but Sarah has my number.

• Climate journalism. Although few of us need more to be afraid of right now, as a non-scientist I’m always grateful to be educated about the nature of the climate emergency. Like the land of the well, the climate we know is more transient than we’d like to believe, and we haven’t grappled with what other environmental conditions are possible for our descendants. In The Atlantic, Peter Brannen reminds us that “[w]e live on a wild planet, a wobbly, erupting, ocean-sloshed orb that careens around a giant thermonuclear explosion in the void. Big rocks whiz by overhead, and here on the Earth’s surface, whole continents crash together, rip apart, and occasionally turn inside out, killing nearly everything. Our planet is fickle.” Climate-alarm fatigue is real, and we should be careful about over-exposure to this genre. But I like how this piece challenges us to try to think in geologic time.

• Starting seeds. In this dead of a pandemic winter, wondering what my future holds, I’ve needed so badly to just see something grow. I haven’t had great success with starting seeds indoors before, but this year I’m trying again with flower, herb, and tomato seeds from Botanical Interests. As they start to sprout, I’m reminded every day how life finds a way.

Thank you so much for reading Evening Docket. This free newsletter is my way of processing what’s happening in our content-saturated era and turning it into something that makes sense to me — although I do realize that I’m just creating more content. Still, I hope it helps you, too, somehow.

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