Change through illness, whether you want it or not

Climbing roses on my porch

It's been a bit over a month since I had major surgery. Yesterday, Saima, the nurse who comes to my house once a week discharged me from home visits: a milestone in a slow, slow journey toward what I hope will be a full recovery.

Early on in her visits, she encouraged me to think of my present condition like this, “We all face adversity at some points in our lives. You'll get over this, and that's what this will be, just a spot of adversity—you’ll look back on it and it will have been a bump in the road.”

It's a reassuring thought. Cancer does not have to be something that forces you to reorient your life and to rethink everything. It doesn't need to change you. You certainly don't need to worry: Am I suffering well enough? Am I gaining any valuable insights from this?

A totally acceptable answer would be: none. I learned nothing. I didn't write beautiful cancer diaries, as Audre Lorde did. I didn't compose a stunning three-part essay, as Susan Sontag did. I didn't write a masterpiece like Rachel Carson did with Silent Spring. Cancer just sucks, end of.

In fact, I resist the identity-shift that is presupposed when we get a serious, life-threatening disease. I welcome Saima's idea to think of it—retrospectively, I am not that stoic I can do it in the moment—as a mere bump in the road. Sontag begins her essay Illness as metaphor (1978) (which argues against the use metaphors for illness) ironically with the following metaphor:

Illness 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.

Well, I prefer to identify with the good passport, thank you very much. I might have to spend time in the bad place, but I certainly don't identify as a citizen of it.

In this respect, I am reminded of what it was like to become a parent. The birth of my first child in 2004 precipitated an identity crisis. I was worried about losing myself. Back in 2004, I loved to spend endless hours in libraries, something that is hard with a baby and no childcare (and, sadly, I never quite did to the same extent since). I did not like baby groups and mom groups (I tried), and I hated the idea of becoming a “mom,” I could not find myself in the role and its expectations at all.

In a similar vein, I worry that my identity now gets squashed into that of a patient. Did you know “patient” and “patience” have the same Latin root ("passiō")? It means “to suffer.” Somehow, I never managed to cultivate the virtue of patience, though I have had ample opportunity for it: the academic job market, the slow referee process, just life in general. I am impatient in spite of it all. Impatient for this to be over, to finally be able to leave this sickbed. Impatient to get back to my life. So, I am not good at suffering.

Still, involuntarily, the experience of illness leaves a mark. Especially (at least I found) the not-unfounded fear that I might die sooner than I expected. When initially it did not look good, I did not serenely accepted come what may. I thought: No! I don't want to die yet! I was taken aback by the strength of my own strong desire to live, the strong will to persevere, almost at any cost. I don't know what to make of that, except that I value being alive more than I thought I would. To try to steel myself, I dosed myself heavily with Seneca. I think that short lives are no worse than long lives, and that I've lived well. It would be strictly speaking not a disaster for me to die at this age (I am not out of the woods yet, so hold that thought). All the same, I'd like a few more decades.

This is hardly an earth-shattering revelation. If anything, it's incoherent: you can't live forever, so how can self-preservation be a life lesson? What I should have learned is to accept the finitude of my life and its unpredictability. But I already knew that life is finite. Having children helped me to realize this, particularly the fact that there's not just a first time, but also a last time for things. Our oldest had the delightful sentence structure when she was about thirteen months or so, to say “help-you” when she got stuck with anything (probably because we said “let me help you"). It was so cute, and we doting parents took it over: “help-you?” when talking to each other (e.g., help-you with the dishes, help-you find this reference). Two months later she figured out the more prosaic and grammatically accurate “help me.” She used to hug me all the time. Now, I'm happy to get a reluctant hug on very special occasions. So, there was a last spontaneous hug. I don't remember when it was, I think she was around thirteen years old. It was little things like that—more than graduation ceremonies—that pressed upon me the irreversibility and finitude of things.

Becoming a parent did change me after all. It taught me things I can only articulate now that our daughter is in college. Similarly, this illness is not meant as some sort of cosmic lesson, but it will teach me things nonetheless. I just don't know what yet. We change, whether we welcome it or not; whether we want it or not. The main thing to keep in mind is that we are more than the change and the challenge. No matter how things turn out. We are resilient, and we are capable of more things than we can imagine. It's not the case that as we grow older possibilities close off. Or rather, some possibilities close off, but as we are faced with various life situations, new perspectives, new ideas, new ways of being disclose themselves to us.

I think that this realization, of how exciting life's journey is with its twists and turns lies at the basis of my strong desire to persevere and to live. As a philosopher, I can find a lot of possibilities and perspectives in things I read. Anything, any book, any essay, can disclose new possibilities for me. Among the more important ones are new possibilities of being in the world.

Virginia Woolf, in On Being Ill (1925), characterizes the phenomenology of illness as follows:

We cease to be soldiers in the army of the upright; we become deserters. They march to battle. We float with the sticks on the stream; helter skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time for years, to look round, to look up—to look, for example, at the sky. The first impression of that extraordinary spectacle is strangely overcoming.

Being ill helped me to realize how thoroughly overworked and burnt out I was. I've been soldiering on in the army of the upright forever. I even barely took time off when my children were born. This is because academia is a race where the early stages hugely matter. You have to stay in the game. If you can't, you're out. Academia is ableist by design. Had this affliction hit me at age twenty-five, I'd likely have no academic career. I could not afford months of inactivity. Children often pose a major obstacle to academic survival for this reason, and so I was very keen to go on and work as if I had none (the fact that my spouse is the primary caregiver and he sacrificed any career for me made this possible). In the end, I was so used to overachieving, I could not stop anymore.

Except now, I have to stop. I look at the sky. I look at the climbing roses outside. Every day, I make a small walk that I try to stretch a little bit: to the end of the street and back, then to the other side of the street and back. The climbing roses open, bloom, and fade. Each stage of the rose is interesting, not only the prime state. As Woolf writes in On being ill, “Let us examine the rose. We have seen it so often flowering in bowls, connected it so often with beauty in its prime , that we have forgotten how it stands, still and steady, throughout an entire afternoon in the earth.”

Today, I write this rambling essay, for the rest, I listen to Proust's Du côté de chez Swann audiobook and I watch the Shōgun 2024 series. I never could find the time for Proust before. There's a strange narrowing of the cosmos but also a liberty in the sickbed, since you can divide your time as you see fit. Time—I can't remember when I had this last—is truly mine to do with as I please.

I resist the pull to optimize this experience (Why not read the entire À la recherche du temps perdu? When will I ever have time for Proust, except in my dotage, if I reach it, that is?)

No, it's time for another round of Tetris. I don't have the executive function or reaction time I had when I played this last on a gameboy age ten, but I managed to get a Voskhod to launch and some festive Russian music. Goals.