Seasick in My Own Skin: Reflections on Chronic Disease

“The itching won’t stop.” 

“We need to call the clinic first thing tomorrow,” my wife said. 

Malaise. Unstoppable nausea. Brain-scrambling migraines. Now this indomitable itch. Such has been my summer. 

When I began life, cystic fibrosis (CF)—a genetic disease characterized by diminished lung function, poor growth, pancreatic insufficiency, salty skin, and numerous other symptoms—stowed away below deck, silently promising me the experience of living death. As Varilek and Isaacson put it, “A living death is a loss of something that is vital to how we define our place in the world. A living death shatters our sense of self and makes us question who we are.” 

Early in 2025, CF came above board to claim its lay. Now I must take a long, hard look at what I am, who I am, and how I reassert some semblance of agency over my life. I must parlay with CF. 

Although only first clinically studied in the 20th century, symptoms of CF have been feared for centuries. Medieval European folklore even warns, “Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon will die.” There you have it. I am cursed. 

As far as I can tell, I am not currently dead. I do not plan on dying anytime soon. Each day this summer, I took “miracle drugs” which supposedly compensate for my “faulty” genes. These drugs often come with unfortunate side effects including: flu-like symptoms, migraines, nausea, brain fog, and even whole-body hives (in my case, anyway). The waves of side effects are as disorienting as the diagnosis itself. I am seasick in my own skin. 

To take my mind off the itch, I found myself reading Moby Dick. In Chapter 110, poor Queequeg, that ever-faithful bosom-friend, comes so close to death that the ship’s carpenter makes him a coffin. Ishmael tells us, 

“But now that he had apparently made every preparation for death; now that his coffin was proved a good fit, Queequeg suddenly rallied; soon there seemed no need of the carpenter’s box: and thereupon, when some expressed their delighted surprise, he, in substance, said, that the cause of his sudden convalescence was this:—at a critical moment, he had just recalled a little duty ashore, which he was leaving undone; and therefore had changed his mind about dying: he could not die yet, be averred. They asked him, then, whether to live or die was a matter of his own sovereign will and pleasure. He answered, certainly. In a word, it was Queequeg’s conceit that if a man made up his mind to live, mere sickness could not kill him: nothing but a whale, or a gale, or some violent, ungovernable, unintelligent destroyer of that sort.”

Queequeg figured out how to overcome living death. Now it is my turn. 

Luckily, I am a philosopher, and philosophy offers tools for addressing these sorts of issues. I bet that Maurice Merleau-Ponty, Simone de Beauvoir, or Thomas Nagel wrote something insightful about living with chronic disease. Avast: I know not where to look. So, I think to myself, “Wait! I’m the wrong type of philosopher for this deal-with-grief-in-a-poetic-way sorta thing. That is the ethicist’s, the existentialist’s, the value-theorist’s territory, right? I should just stay in my formal-philosophy lane.” 

But how do I overcome my living death? Like most interesting philosophical questions, no answer is readily available. I think, however, that my philosophical training would be pretty much worthless if it failed to help me at least explore potential answers. Even formal philosophy can be a caravel during life’s hardest moments.

As I grappled with side-effects, I taught deductive logic for the first time. Early in the course, I told my students, “Every language requires at least three things: syntax, semantics, and pragmatics.” (Strictly speaking, this statement might be false; a language may exist in an abstract, purely theoretical sense without pragmatics. Oh well. Good teaching is virtuous lying.) This triad helped me make some headway.

The syntax of a language provides the recipe book for how symbols of the language can be combined. With that in mind, I think of the syntax of CF as the set of biological mechanisms by which CF operates. In other words, the syntax of CF is what is physically wrong with me. 

The semantics of a language, on the other hand, concerns meaning in the language. Semantics provides a guide for mapping symbols onto the world. When I consider the semantics of CF, then, the symptoms of CF come to mind. The symptoms of CF are the means by which the mechanisms of CF are actually felt in the world.

Although my doctors understand the syntax of CF better than I do, I understand the semantics of CF far better than my doctors. I am an old salt. To get the most out of their advice, I need to remember that in some circumstances, I am more of an expert about CF than my doctors. I have lived the semantics of CF for close to three decades. I should use that expertise. 

Now for the last of our triad. Broadly speaking, the pragmatics of a language concerns how that language is used. Pragmatics deals with the context of the language when it is implemented into our lives. So what is the pragmatics of CF? 

There are probably too many dimensions to consider here. One major element, however, is how someone with CF gets the most out of life given their problematic body. In my case, I have long believed that embodiment is core to personal identity. I must now reckon with the paradoxical nature of embodiment amid chronic disease. My body is, in a sense, all that I have. And yet, my body regularly fails me. I find myself questioning the seaworthiness of my vessel. 

To show how the pragmatics of living death unfolds, I will explore this more.

Even before the diagnosis, I would catch myself thinking, “I should already be dead.” This usually happens when I am unable to do something that a typical person (without CF) can do easily, but sometimes it even happens when I am simply going about life. Since the diagnosis, this thought crosses my mind at least once a day.

I do not understand this thought in the slightest. Because of the word should, the thought looks normative. But what norm, what standard, what value, what rule, is referenced in the thought? Perhaps it refers to some law of biology? Biologically speaking, I should be dead? In that case, though, the thought looks plainly false. As far as I am aware, there is no biological law of nature that dictates when individual organisms should die. Even if there is such a thing, my beating heart falsifies the law (…or shows I haven’t met the conditions for the law, but that phrasing is less punchy, okay?).

I am flogged over the capstan. My stomach aches, the seasickness returns, my focus drowns in the waves of a migraine. Snap out of it! Mere sickness cannot kill me—nothing but a whale, a gale, or some violent, unintelligent destroyer! 

I have it: “I should already be dead,” is an expression of emotion. It is an expression of a deep, existential emotion, on par with: “The world is absurd.” When I find myself thinking that I should already be dead, I mourn what could have been. I feel the angst, the dread, of my diagnosis. This is the pragmatics of my living death at work. 

Now I know that I am part of the living dead. I am a philosophical zombie (but not in the sense philosophers are used to) sailing aboard the Flying Dutchman. Perhaps you are a fellow zombie, dealing with your own living death. Welcome aboard. Have the 300^th lay. I hope that some philosophical analysis can help you gain your sea legs. It helped me. 

Of course, logicians may complain that I use the terms syntax, semantics, and pragmatics in loose, metaphorical ways. Such complaints leave me unphased. This usage, to me, is simply philosophy. Jeff Kasser, who is one of my philosophical mentors, likes to say, “Philosophy is the discipline that requires us to get into touch with our inner mathematicians and our inner poets.” Construing CF as a new language makes it easier for me to get a grip on how to keep making forward progress in the face of death. Like Queequeg, I have unfinished work ashore.