We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world.
– C.S. Lewis

I am not the kind of doctor that people see when they are feeling fine. Everyone who sees me has, or recently had, a problem so terrifying, debilitating, or chronic that they have found their way through several referrals into my exam room. So you would think I have some idea of what being sick involves.

But what I learned from a recent period of illness is that talking to people about their sickness and pain is quite different from experiencing it yourself. Being sick is less like a condition you have, than a world that you live in. Any act of description feels like an act of translation—an attempt at conveying surface meaning which is ultimately unable to encompass the ranges and subtleties of expression which any language entails. You might say “it hurts,” you might choose a few adjectives to describe that sensation, but in the end, living inside pain is not something you can consolidate into a few phrases, any more than you could not describe living inside your house or your marriage that way.

The description I came back to most often in my attempts at translation was that my pain felt like a megaphone constantly blaring in my ear. Do you get used to a megaphone? In the sense that you learn to listen past it and function through it, yes. Sometimes the volume would fall to a point where that was easier. Sometimes it would rise to a level where I could no longer focus on much of anything but getting through the next few minutes. But it was always there, constantly taking some level of energy to manage.

And that is tiring, on all levels. Physically, the simplest movements now involved a complicated calculus of risks; things that I did with unconscious ease in the past required significant time and effort. It felt like my body had betrayed me, like there were a whole new set of rules now that I had to learn and live by. Emotionally and mentally, I had to cede control. I had to admit that I would now wake up not knowing how much I could do on any given day. I had to accept my lower and more variable level of functioning. I had to manage the fallout that would have on everyone else. In all of that, there was anger, frustration, disappointment, loss—and loneliness.

It felt strange, to look no different from the outside, yet be aware that I lived in a world entirely removed from everyone around me. I began to see things I had never noticed before. Sometimes, that felt like a revelation of consolation and joy—I appreciated the things that did work in my body in a way I hadn’t before. I was grateful for small pleasures that distracted me from the pain and passed the time. Once, while I was going through the motions of getting out of the car, I looked down and saw glinting on the driveway a little metal stitch marker—undeniably mine, yet one I had never known I’d lost—so small I never would have seen it had the pain not forced me to pause. I wondered how many times I had passed it by before now.

Sometimes, the revelations felt more discouraging. I began to see how poorly-versed our family was at service and compassion. If I ambulated more slowly, I was more liable to be left behind than find someone next to me offering a shoulder or hand. The chores that I struggled to do were more likely to pile up than be quietly done by someone who noticed. Our kids were not used to looking for how to help, not used to slowing down when out to do something, not as a way of life.

And I began to see things about myself—that somewhere in my life I had picked up the idea that being sick was my fault, something I needed to get over, so I could return to my high-functioning self. I did not know how to offer myself the compassion I gave my patients. I did not know how to accept a state of being where my worth was completely severed from anything I did or could do. I was not practiced at asking for and receiving help. I realized that my chronic struggles with judgment began with how I viewed myself. And until I could turn to myself with tenderness and compassion and grace, I could never genuinely give those things to someone else.

I didn’t stay in that world forever. Even now, I feel my body beginning to do things a little more quickly and unconsciously. I can’t say I’m not relieved. But I don’t want to forget the things I saw. I don’t want to live in fear of being there again. I want to retain this sense of myself, as one able to be whole in who I am, whether I’m in sickness or out of it.