I’m a planner. One small unplanned moment will set me off track. Your decision to keep me waiting while you fix your hair has a butterfly effect that ruins my day.

RAbestlaidplansI’ve been teased for being too organized, too picky, too impatient, too inflexible. But I’m none of the above. I’m in crisis mode 24/7, always doing damage control.  I’ve got two active, chronic, painful diseases so I have to plan everything to the tee because the unexpected will happen.  I may wake up the morning when I have to give an important presentation and notice that my fingers are so swollen I can’t hold on to a brush to comb my hair.  Assess.  Triage.  Adjust.  These are my days.

Occasionally I have lulls. But long periods of unstructured time feel at once luxurious and dangerous. I move from being at ease to worrying about what I should be doing, or what I’ve forgotten to do.

And when plans fall apart, well, I’m thrown.

These are the mini disasters I fear. These are the dominoes that knock me down.

You scheduled a meeting with me from 3 to 4 in the afternoon, but because you screwed around at lunch, the meeting now starts at 4 and ends at 5. How nice for you. Now I’m an hour behind—my grocery store run is too. And by the time I’m driving home it’s gonna be dark, and my vision is gonna be fuzzier than it was in the daylight, and it’s gonna be much harder to get home than it was an hour ago. I’m thinking about calling a cab instead, which is gonna cost me.

And tonight was the night I was going to take my methotrexate shot, which makes me quite sick, and now you’ve pushed that back too. I’ve timed how long it takes me to recover from methotrexate and it’s about 10 hours. If I have to teach in the morning I want to be done with my methotrexate hangover by the time class starts. And you’ve just messed that up. There’s not enough time to leave work and go grocery shopping and take my shot and feel better. So I’ll just start my day feeling pretty sick and worrying about who’s going to notice.  Yeah, that’s why I didn’t want to push the meeting back.

You think we have 30 minutes to get to the airport. I think we could really use 45. You’re driving so we go with the tighter 30 minute window. At the airport, the line through security is longer than anyone could have imagined (anyone except for me) at 6 a.m., and I’m now standing in line, shoelaces untied, knees swelling and arm throbbing from the effort it takes to pull all my junk behind me.  I have less time to get to the gate, so when I finally make it through security I have to hustle.

My version of hustling means limping at an accelerated pace, dragging one slightly bent-kneed leg behind me. This move puts strange pressure on my hips and by the time I get to the gate I’m sweating and in pain and it’s too late to be one of the people who takes advantage of the extra time to board. I am always one of the people who needs extra time to board.

“It’s just a five minute walk,” you tell me. I offer to pay for the closer, more expensive parking lot spot and explain that I only wore these boots because I thought we’d be parking there and I looked it up online and I really, really don’t mind paying for it. Just like we talked about, remember?

“Come on,” you say. I lose this one.  Again.

Fifteen minutes into our five-minute walk I give up and need to sit down. There’s no bench in sight. The only place I can find is the sidewalk, a small sliver of concrete, the only one not covered in weeds.  I plop down on it, and remember that I’m not supposed to do that because of my vulnerable coccyx.

There’s a gutter underneath my legs that I didn’t see and next I notice that there’s also a rivulet flowing into the gutter and because of where I’m sitting, which is really the only option other than that spot that reeks of urine, my special boots get wet.

You look at your watch, not to apologize for the time the walk is taking, but to calculate how much of the show we’re missing. You sigh. A sudden, sharp pain from the inner abyss of my right knee makes its way to the surface and the skin stretched tight across my kneecap shudders in response. It looks like I’m twitching while I linger inelegantly over my gutter throne.

So please believe me when I tell you that it’s time to go or time to get up or time to start walking. I’ve already thought this through. I know you can run those extra blocks but I can’t. I never will. Ok, pretend like you’re doing me a favor.  Whatever it takes.

My plans revolve around making sure I get somewhere according to my own sense of time. I can’t rush because I’m not well enough to recover from the extra effort rushing requires. I’m hyperaware of where every parking lot is and what time it’s best to arrive to get a spot closest to the entrance. The shoes I pick out at 7 a.m. and wear all day long are chosen to help me survive the short time I’ll spend on my feet talking to my boss at happy hour.  The time it takes me to slowly slurp one glass of white wine.  The only kind of alcohol I can really consume these days.

During that conversation, I’ll sink into my heels.  Hopefully the shoes will help keep me upright and give me some peace of mind when I start to feel my knees giving out underneath.  That’s the way I planned it.