This morning I bought a cup of coffee from a small chain restaurant in exchange for using their bathroom.
I gave away the coffee.
Is $2 a fair exchange rate for bathroom access?
In a strictly accounting sense, probably not.
But would I rather trade $2 for peace of mind and not having to go back home to change clothes?
Would I use $2 as a goodwill proxy to encourage small chain restaurants to have public restrooms?
It’s time to add a $5 bill to my poop kit.
Gotta pay that poop tax.
My commute home from work has become a choreographed dance routine, a formation composed of transportation interspersed with side trips to public bathrooms. The timing works perfectly–step off the train, waddle to the bathroom, and get back just in time to catch the next train.
It’s one of the many routines I’ve developed to cope with being in an active period of my disease–something which Caitlin Shetterly is also familiar:
When a person is sick – and chronically sick – nothing is normal. I have to say, I felt a bit like Christina in the famous painting by Andrew Wyeth – everything I longed for seemed just out of reach. And I was at such a tender time in my life – my son was a baby, I’d just handed in a book, I had friends and a family and a husband I wanted to be close to – and yet I felt boxed in by this illness that was like a kind of private, inescapable jail.
Yes–that is exactly it. So boxed in, that private life which is so narrow and utterly impossible to share with others. The routines and coping mechanisms we build up to function in the (brutal) real world, which most of the population would consider weird or pitiable or crazy. And the absolutely painful realization, every once in a while, of how different we are.
I’d really like to go hiking. It’s been months since I’ve been. But to do so now would be foolish, inviting accident and embarrassment. There are no public restrooms in the foothills of Mt. Hood.
If a friend invites me, I’d have to say no. I could try to explain why, but this sort of environmental micro-management is almost impossible to explain to people who have never lived with or cared for someone with a chronic illness that requires outsmarting at every turn.
I work within my own limitations–and try to do so cheerfully–but I recognize that they do prevent me from living an unfettered life. That life exists–I can see it on the horizon, especially on good days–and I can only dance towards it.
But I never quite get there.
The rest of the article is worth a read, too, for reasons having to do with propaganda, personal experience, and science–more on that later.
Today, or rather at 1am last night, as I sat on the toilet for the first time that night, I started to ponder all the different “moods” of my gut. There are so many of them, and I have learned to parse out their different meanings so they are very helpful to me. What I’m not sure about is if I could communicate them to others.
I once sounded like a crazy person in my doctor’s office as I tried to explain that the symptoms I was experiencing (diarrhea, urgency) were not the same as Crohn’s symptoms (diarrhea, urgency) because they came at a different time of day. But this is true–over the course of my life, I’ve learned that a “normal” cranky, inflamed gut means symptoms first thing in the morning. Symptoms at another time of day, to me, mean something else. In this case, it was SIBO.
(A few weeks after that doctor’s visit I passed another SIBO breath test with flying colors, and–as the treatment started working–symptoms returned to normal.)
It’s those finer points of knowing my gut that can mean the difference between a peaceful commute and one where I’m praying with my butt clinched as tight as possible.
Or other things, such as:
- The fine distinction between a wet fart and a fat, dry fart…before you let it rip.
- Feeling when stool passes into the descending colon, and how fast it is travelling downward, thus dictating whether you get to walk or run to the bathroom.
- General inflammation (my ten-year-old self called it “washer machine tummy”) versus a specified area of intestine with, say, an ulcer.
- Feeling an especially intense bout of the Migrating Motor Complex and distinguishing it from garden-variety cramps.
- And for that matter, discerning between uterine cramping and gut cramping. I don’t even think my own body can tell that one!
If you’re reading this, and can identify with anything that you’ve read, let me know in the comments below. I’d love to compare notes.
The rumble started as I put on my shoes.
I listened closer: not quite drop everything and get to the bathroom levels, more along the lines of polite gas advisory.
It was time to leave. I had to make a decision. I decided to chance it.
Walk to the train stop.
Catch the train.
Transfer to the shuttle bus.
Still good, no issues on my commute. The gamble paid off.
Things changed on my way home, however. Let’s shift into reverse.
Shuttle bus – no rumbles.
Catch the train – now things get a little interesting. Rumbles have reached the descending colon, which usually means it’s time to boogie. I mentally calculate the time remaining on the train vs the amount of time it would take me to get off at the next stop and find a public bathroom vs the severity of the rumbles. Once again, I decide to chance it.
Every few stops, my gut pipes up and reminds me of all it can embarrass me in public.
At this point, I’m committed. I leave the train at my stop, and set out for home at a measured pace. Fast enough to get somewhere, but not fast enough to catch wind or make things move faster.
As I near my front door, the urgency rises – the rumbling starts again – and I start wondering if I can make it. Stick the key in the lock, open the door. One of my roommates is hanging out with her dogs, and I blast past with the “gotta pee” excuse.
I make it to the bathroom just in time.
Over the years I’ve gotten pretty good at listening to my body, of translating various signs and symptoms into actionable cause-and-effect chains (or at least as close to them as possible; it gets pretty tricky sometimes).
The hardest part is that my guts do not speak English or even Korean or Braille or any other language that uses abstract thought. Guts speak physicality. They speak hormone. They speak feeling.
Even then, I can only observe through a 3rd party translator, like the health of my skin, or my energy levels, or the quality of my poops. I can’t talk to my guts directly.
Sometimes I get so frustrated because I JUST WANT TO KNOW WHAT YOU NEED, GUTS. More probiotics? Kill bacteria? Sleep? Are you dehydrated? Do I need to feed you more fiber or less fiber? JUST TELL ME!
And that’s the problem: they are TRYING to tell me.
It’s the same with plants, you know–they’re distressed and wilting, turning yellow and dropping leaves all over your desk–but you don’t know WHY. And they can’t tell you. They’re already doing the best they can to survive but I’m overthinking things like AM I OVERWATERING OR UNDERWATERING? DO YOU NEED MORE LIGHT OR LESS LIGHT? WARMER OR COLDER?
That’s when I pull out the little plastic stake with instructions, that comes with the plants. Those at least give you a hint of what you’re doing wrong and how to fix it.
Sometimes I feel like it’s a complete shot in the dark as to what’s going to make my gut better, since my abdomen didn’t come with a little plastic stake full of instructions.
But that’s not entirely true–I know from experience and talking with my doctors what is good for me. More low-FODMAP fiber, more sleep, more water, more herbals.
Usually one of those helps.