Health innocence

When I begin composing a new post in my head, I know it is time to write. I don't know if anyone has used the term "health innocence" before, but if not, I'm coining it now.* Since my lung cancer diagnosis, I have lost my health innocence. Health innocence is the belief that we and our closest loved ones will inhabit what Susan Sontag calls the Kingdom of the Well**, at least until we're senior citizens, when health problems can be expected and reciting a litany of ailments becomes the butt of jokes.

Now that I've crossed over to the Kingdom of the Sick, I no longer think of X health problem as outside of the realm of possibility--for me or anyone. After all, what is the likelihood that a super-healthy, 49-year-old runner who's never held a cigarette or lived or worked in highly polluted conditions would develop lung cancer? Or that less than a year earlier, my nephew would be diagnosed with colon cancer, on the cusp of turning 36? Exactly. 

Cancer was one of three possibilities that my pulmonologist in Germany initially laid out in June 2022, but truthfully, I never entertained the possibility that it could actually be cancer. The biopsy was just to rule it out. That swollen, painful vein on my foot 5 weeks later? Probably just a random injury, my German oncologist assured us. Nope, my instinct to worry was right: it was deep-vein thrombosis and the blood clot became a life-threatening pulmonary embolism. When the Impossible, Worst-Case Scenario happens to you, the veil is torn. There's no longer any illusion that we are immune to a scary health diagnosis, that it won't happen to us or someone we love.

Hence the anxiety I felt during the past 16 hours. Lily has been sick off and on since early March: one, possibly two, rounds of strep and lots of coughing even after antibiotics. Then this past Sunday her lymph nodes were swollen. On Monday it got worse, and then it began to hurt to swallow and open her mouth. Leland took her to the doctor yesterday: mono test was negative. They ordered some other blood tests whose results would arrive on Wednesday. Then last night Lily developed small red spots on the top of her mouth, similar to strep. I learned just before going to bed that this other test was for...leukemia. 

So of course I was overcome with worry and couldn't fall asleep for 2+ hours, while Leland woke up 2 hours early, both of us picking at this possible diagnosis like a hangnail. Last night and this morning, Lily became convinced her wisdom tooth was the problem. Back to doctor: strep test was negative. Got in to see our dentist, who said everything looked fine, except that there was visible irritation and swelling near the tooth. He thought the problem was something "systemic" (affecting the whole body), perhaps the last throes of a virus that manifested in the mouth. I had been hoping for a positive diagnosis so we would know what it was. Some of Lily's symptoms were associated with leukemia -- there are medical journal articles with titles like "Oral manifestations of leukemia as part of early diagnosis" -- and of course a lot of less scary things, but we'd ruled out the obvious culprits.

Leland called the doctor again around 1pm today and got the test results already: negative for leukemia, and all the other indicators look fine. The doctor thinks it's some random virus. 

I've always been prone to worry, but I'm not a hypochondriac. Before my diagnosis, I would have just assumed this was some minor thing. Now that the Unthinkable has happened to me and my family, I can't not think it. There's no reason the Worst-Case Scenario can't happen again. Sometimes lightning does strike twice. And with my health catastrophe track record, I'm half-way expecting it to.

It's hard enough not to catastrophize if you've never experienced a health catastrophe (or two), and nearly impossible when you have. I find a rational approach ("How realistic is it that X will happen?") utterly unhelpful, because I've already been on the losing end of infinitesimally small chances. "There's only a tiny chance that it could happen" is no longer reassuring. When you've crossed from the Kingdom of the Well to the Kingdom of the Sick, you realize a few breaths and heartbeats are all that separate the two kingdoms. It's a porous border.

So what do you do when you've lost your health innocence? As my friend Melissa put it, "if it's not good news, we will rally and fight and do all the things we now know how to do that we wish we didn't." 

I'm thankful we didn't need this plan today. I've gotten better with worrying about my own health (no more reading those CT scan reports ahead of time!). However, now that I'm dwelling in the Kingdom of the Sick, I realize that I need a new plan for managing worries about the health of loved ones.

* A quick Google and Google Scholar search suggests I may indeed have coined this term! 

** “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 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.” (Sontag, Illness as Metaphor, https://www.nybooks.com/articles/1978/01/26/illness-as-metaphor/) This metaphor was also the basis of Suleika Jaouad's book, Between Two Kingdoms.