Trust and Distrust
A short reflection
This is now the second Advent where question marks hang about my mortality. Lent is a little easier to grapple with in this condition. Advent offers something of a reversal: Jesus chose to be human? He could’ve revealed God’s ineffable nature to us in any form, but opted for the same susceptible hunk of electric meat as the rest of us. That does seem pretty incredible, in the dictionary sense of the word.
Anyway—this isn’t the main reflection I’ve been thinking about. There’s plenty of time for grappling with The Mysteries over the next months.
One of the things that now strikes me odd after living with this rebellious body over the last year is the nature of self-trust (or, better, distrust). For some reason, I have recently been inundated with posts and articles and whatnot about learning to “trust your body”. I think the market for this mantra tends to be folks who are not cisgendered males. And that’s fine—and also why, as a cisgendered male, I’m not going to be commenting on body-trust issues from a general standpoint (there are many qualified folks talking about this from various perspectives, and I encourage you to read them if you’re interested in learning more broadly).
Here I want to simply think about the particular effect of disease and treatment on my ability to trust or distrust my body. This I know something about, though not to the same degree as people dealing with more chronic illnesses. And especially those dealing with invisible chronic illnesses. While some cancers can do their thing inside your body for quite a while before symptoms manifest, the vast majority of them do indeed cause something to happen to you that leads to their detection.
As I mentioned in my first post here, this all started for me when my gallbladder, pancreas, and biliary system decided to revolt. I knew something was wrong, intuitively. It took three doctor visits and then finally a trip to the emergency room to receive the diagnosis of pancreatitis that I was, essentially, arguing for. I didn’t want to have pancreatitis just for the sake of being proven right—in fact I really hoped I was wrong. But when the treatments for the other dart-throw diagnoses weren’t working, I reached the point where it felt good to have known what was happening to my body. Until you undergo batteries of tests, it’s not possible for someone external to you to know with perfect certainty what’s happening to you; it’s basically down to your ability to describe how you feel and for a doctor to observe with all their experience and skills. But I get it. Most people are rubbish at describing what’s happening internally. Sometimes due to disconnection, many times because we aren’t taught the lexicon. (An easy example: do you know the difference between fatigue and feeling tired? Most people don’t, but medically there’s a crucial difference.)
So I’ve “trusted” what my body was telling “me” (I am my body, aren’t I?). That leads to a cancer diagnosis. And then, the wackiest thing happens: to treat cancer, you do things that harm your body in ways that are meant to heal it. I’ve talked about the irony of this before, but from a mental perspective, this is where a certain fracturing occurs. I’m not just talking about undergoing side-effects; that’s evidence that a drug or treatment is doing something, but it’s not necessarily evidence that a drug or treatment is contributing to the ultimate goal of healing. After my first chemo regimen, I eventually started to feel “better”. But was that simply because of the absence of the debilitating treatment, or because the cancer was going away? In my case, it was the former.
This is where the fault line appears between mind and body. Does feeling better actually mean being better? Does feeling worse actually mean being worse? I joked at one point with my oncologist that I was concerned that not having a drastic side effect to a certain treatment must mean it’s not working. Sometimes, yes; other times, no.
After the first chemo regimen ended, I didn’t know what to think. I had the PET scan, I waited. I was feeling better; I thought we’d nailed it. The news was that while the chemo had gotten most of the cancer, I was not in remission. So onto the rollercoaster I hopped again.
A couple weeks after my second chemo regimen finished, I was faced with this odd issue of trust again. But this time, I kind of knew: something didn’t “feel” right, and I have absolutely no way to explain that. I wasn’t symptomatic. I wasn’t being pessimistic. I just…knew. And I was right.
I want to be very, very clear about something, as a quick aside: while I am in part externally vocalizing all of this to make you more aware of what I, Charles the Real Human, has been experiencing, the main purpose for writing this is to make explicit something I am sure others with life-threatening illnesses are also experiencing. People who have been a part of your life longer than me, who have already died and who will die.
Sure, confronting mortality is psychologically precarious as it is. (Did you know that you can have PTSD from surviving cancer? I sure didn’t.) But this is something…slightly different, I think. Not because I want to be okay with the possibility that my life will be ending, but because I desperately want to live—and if I do get to keep on living, I have to do it with this brain in this body. And so does anyone else working to escape their presently dire condition.
So. This time, I have no idea what to feel or think. My brain is disconnected from my body. And whether the news is bad or good, I think this Advent season is going to be focused on trying to reconnect them.