Sometimes I underestimate the amount of impact that chronic illness has had on my life.

Some people live their lives untethered, flitting from one activity to the other. Or, conversely but just as freely, they live driven toward a single goal. In both cases, nothing gets in their way. They aim themselves at what they want, and go for it.

I envy them, in a way.

My path has been much less clear. My river is full of snarls, backeddys and boulders — to navigate well, I must always have my eyes open. I scope out the river in front, the depth underneath, and feel the the wind’s speed and direction. In order to live my life, I have to plan ahead, outsmart my own guts, and make changes on the fly when my own body decides not to cooperate with me.

Does this always have to happen? No. I can go back on high-octane pharmaceuticals and live a relatively normal life for a while (that is, until the side effects catch up to me again). I’ve chosen this life, to live without drugs but with a treacherous body.

Sometimes I wonder if this envy is a byproduct of looking at other people’s lives from the outside in and missing all the hairy, awful details that a person chooses not to share with the world. There are certainly lots that I refrain from sharing. But I’ve also had conversations with people, and interacted with friends, where they talk about a lack of common ground with people like me who have to fight through chronic illness to get where we want to go.

I have a doctor friend, for instance, who doesn’t know how to work though sickness. To his credit, he’ll admit that he becomes a big baby when he’s ill. But because he’s always been so healthy, he has no framework for unhealth.

Dissimilarly, I made friends with a guy who was one of the bangers, who took advantage of his cool, clear river to swim from shore to shore, and explore every rock and branch that came along, as he took a passing fancy.

It was very difficult making plans with this person, because everything I do has to be planned out, but most everything that he does is spontaneous.

It’s in those moments, when the incompatibility between my life and another’s shines bright — so bright that it prevents us from connecting — when I feel my disease most keenly.

It’s not the physical discomfort that the problem — that’s easy to live through — but the utter disconnect with people whose bodies are the vehicles for their souls and nothing more.

My body shapes my life.