Thoughts on Resilience
I have been labeled “resilient” more than a few times. I had my thirteenth major surgery a month ago, and shortly after waking up in the cramped recovery area, my surgeon came to my bedside. Having to project over the familiar din of the surrounding machines’ beeps and buzzes, he informed me that he couldn’t complete the operation as intended because (and I’m paraphrasing here) “things looked too messed up inside.” I’ll need to have my fourteenth surgery later this year to finish the job. Most likely a fifteenth after that.
I’ve been thinking about resilience a lot lately. Not only because it has personal relevance, but it feels like we haven’t gone a week since the pandemic started without a new article being published on the topic. I’ve read many of them — some I’ve liked, some I haven’t — but one topic that has felt noticeably absent is the experience or the feeling of being resilient. I think our collective understanding of resilience — which feels mostly outside-looking-in — is an image of strength, of bravery, of practiced perseverance. But my experience has been much more complex. When people have called me resilient, I’ve often felt anything but.
After this most recent surgery, I spent four nights in the hospital recovering, went home to five blissful-yet-still-painful nights in my own bed, then returned to the hospital with an emergency bowel obstruction where I managed to avoid surgery but had to undergo an intervention known as the nasogastric (or “NG”) tube. A doctor shoves a stiff, thick tube about the diameter of a #2 pencil up your nostril, down through your throat, and into your stomach. Then they leave it there for days, slowly suctioning out the contents of your insides. Of the many medical ordeals I’ve been through in the last 20 years, the NG tube takes the cake as the worst, hands down.
It doesn’t just hurt your nose or your throat. The pain radiates to your whole face. It hurts to swallow, it hurts to turn your head, it hurts to smile, it even hurts to cry. Speaking is a next-level challenge, as engaging your vocal cords invariably jostles the part of the tube that’s hanging in your throat, causing you at best to gag and cough or at worst to vomit, most likely on your hospital gown. While you have the tube in, your mouth is dry but you’re not allowed so much as a single ice chip to wet it, and the nostril the tube is occupying gets so irritated that it becomes a waterfall of snotty ooze. Problem is, you can’t wipe it or blow your nose because of the pain, so during this last hospitalization I went through hundreds of tissues which I’d shove between my nose and upper lip and just hold there like a soggy white mustache until they needed to be replaced.
I spent five nights like this, trying to sleep in the tiny hospital bed with its over-starched sheets and flimsy blankets, navigating an IV pole on my right and the NG tube on my left, being woken every 90 minutes by a rotating cast of night nurses and personal care technicians needing to take my temperature and blood pressure or give me my nightly dose of Heparin (a twice-a-day injection that prevents blood clots but leaves sprawling purple welts at each injection site) or draw blood (its own ordeal thanks to my uncooperative veins) before finally being discharged back to the comfort of my own bed.
A few hours after returning home, when the sore throat I’d attributed to the NG tube still hadn’t gone away, and when I developed a low-grade fever, I took a covid test. Just a precaution, I told myself. But my heart sank as I watched those three small drops move across the test strip, leaving not one but two dark lines in their wake.
Point is, it’s been an eventful few weeks, and I’ve been praised for my resilience. It’s not a term I object to, per se. I have been resilient, I suppose. But I haven’t always felt resilient, at least not in that fearlessly-rising-to-meet-each-challenge kind of a way. I’m doing it because I have to, because there’s no other choice. And while I’d love to feel like this is a hurdle I’ll get past and things will eventually go “back to normal,” that’s not the reality either.
On Chronic Illness and Resilience
After consulting 14 different definitions of resilience, I can boil it down to the ability to bounce back and become healthy, happy, or strong again after experiencing disappointment or hardship. But the idea of “bouncing back” implies that there’s a normal, healthy back to bounce to. And when you have a chronic illness, that’s often not the case.
I am known for being what some might call pessimistic but what I would call realistic about the experience of having a chronic illness (see: Having a Chronic Illness Sucks and It Never Stops Sucking). You can have periods where you feel better, or episodes that need less acute interventions, but the reality is that when you have a chronic condition, you live with all that comes with it every day. The idea of “bouncing back” doesn’t feel earned (am I doing something impressive simply by living my life?) and also doesn’t feel like it does the experience justice (I never get a respite from the difficulties, so rather than episodically, whatever strength I’m tapping into, I’m tapping into daily).
A lot of the time, I feel less resilient than I do numb. I’m accustomed to this type of adversity. None of it is newly upsetting. I’ve had thirteen surgeries, and I don’t expect the fourteenth or fifteenth to be my last. I’ve been poked and prodded in every conceivable place, I’ve processed upsetting news about the limitations of my body, and I’ve had scary complications that almost cost me my life. When it comes to my health, I don’t expect things to go well. I wouldn’t exactly call it pessimism; it’s closer to apathy. Things are bad, but they just are. It doesn’t mean there aren’t also good things in life; of course there are! But when my health takes a turn for the worse, I’m not surprised.
I’ve often heard some version of, “I could never do [insert unpleasant medical thing here].” I could never have that many surgeries, I could never give myself injections, I could never have an ileostomy (something I’ve now had, reversed, and have again). But the reality is I don’t have a choice about any of these things, and neither would you if you were in my situation. You would do them, get through them somehow, just as I’ve done.
Which leads me to an even less glamorous conclusion: beyond resilience, and beyond numbness, what I’m doing is plain necessity. I suppose I could just give up and throw myself on the floor and refuse to eat or drink or go to work. But that’s not how humans are. That’s certainly not how humans with chronic illnesses and disabilities are. We learn early that life is hard sometimes (or: all the time, for some) and we move along and deal with it.
I don’t feel like I’m demonstrating resilience so much as just doing what I have to do. Resilience feels like a choice. And I don’t feel like I’m choosing anything, I’m just…doing.
On the Limitations of Resilience
I’ve often seen resilience used as a blanket term to describe someone: That person is resilient. But this doesn’t quite feel accurate to me. I may be resilient when it comes to medical issues, but that same resilience doesn’t necessarily translate to other areas of my life. I have to tap into so much resilience to deal with my ongoing health issues, that I don’t have much more to go around when it comes to other things. This is why I can sometimes obsess over a single piece of mildly negative feedback at work, or why I quickly give up on hobbies I’m not immediately great at. Or why the absolute worst thing I can imagine in the world is someone being mad at me.
Intellectually, I know that these are not a big deal: critical feedback is not only unavoidable but helpful, practice and experience make us better at things that are initially difficult, and relationships can weather disagreements. And yet, when I’m confronted with these things, I crumble into a puddle of whatever the exact opposite of resilience is. Because my resilience is all used up. That well is dry.
And that limitation doesn’t just apply to non-health-related setbacks; it’s a part of my medical experience, too. Because today — still recovering from surgery, an intestinal blockage, and covid — I am feeling relatively ok. I’m sipping on some Pedialyte and typing away in a sunny corner of my parents’ terrace overlooking the Palisades, and I’m feeling, all things considered, generally ok. But just a few nights ago — when I called my partner in tears and asked him if he thought I would ever get better — I was not feeling particularly resilient. Because often, even when you’re being resilient, you don’t feel resilient at all. You feel nervous, afraid, weak, discouraged, but you power through anyway. The same way people don’t necessarily feel brave when they do something brave; they feel scared and uncertain, but they still do it all the same.
We like stories where people overcome adversity, where they bounce back from difficulty, where things are bad for a time, but then the bad ends and gets good.
But chronic illness doesn’t work that way. Illness isn’t something you either die from or overcome. There’s a third option, which is that you live with that adversity every day. Some days it might be better; you might even forget about it. Other days, it might feel like the worst thing in the world. These aren’t happy stories but they’re also not tragic ones. They’re stories in which people deal with something difficult that just… stays difficult. These stories don’t have that familiar rising and falling action we’ve all come to expect, and they don’t have tidy resolutions. But they still have change and growth and depth and meaning.
We don’t see these stories and narratives enough. Which is unfortunate, because they feel much truer to my experience. They’re not as clean and they don’t always have clear beginnings, middles, and ends, but that’s what life is like.
I’d love to see more of these stories. More, different, nuanced, complicated, honest, messy stories. I’d happily pass on the “Top Ten Tips for Building Resilience” in favor of narratives that dig just a little deeper into what that actually means, the nuance of what resilience looks like, and what it feels like. Because those other stories have already been told time and time again. And I’m ready for something new.
