Photo Source: IMDb
As I prepare to go on a 3-day bike trip, with a to-do list that wouldn’t faze the average person, it occurs to me there’s another universal truth that all of us with invisible disabilities face—the clock doesn’t work the same for us. It not only takes more energy to accomplish tasks, it takes more time. I’m looking at my list and feeling panicked, like maybe I won’t be able to get to it all before I go, and if I do, will there be enough of me left over to enjoy the trip? (Yes, it all really needs to be done.)
I consider myself to be a high-energy person, a self-starter and a brutally hard worker. This is not apparent to people to don’t know me well; they see someone struggling to accomplish a normal day and roll their eyes.
Yesterday I took a bus down to Seattle for an errand, leaving at 8 AM and returning at 3 PM. The ride down was comfortable. A woman I’d seen at the transit center before and thought looked interesting sat next to me and I got to know her. She is indeed fascinating and the ride went so fast, I was startled when we arrived—already? I descended into the transit tunnel, knocked out my errand on the other side of the city, and returned to the Asian market by the bus stop. During this time I’m pretty sure my purse/backpack gained about 42 pounds without me adding a single item to it.
I went to the bus stop 15 minutes before the bus was due. My ticket said to be there with 20 minutes to spare, but I know just how long it takes them to unload and begin boarding, and I knew I could sneak in an extra 5 minutes of sitting time. Because there is no bench within a block of the bus stop. The only possible sitting surface was the edge of a street light post. There was a crescent-shaped space where the square light post mounted on the round concrete pillar, about six inches lower than the average public toilet seat. (If that made any of your body parts cramp in sympathy, that was the point.)
I made it about 5 minutes before I got shooting pains in my sit-bones and had to get up and walk around. The minute I gave up the surface, a young man nabbed it. He looked perfectly able-bodied, but then so do I, so I consciously conferred upon him the benefit of the doubt. For the 18 minutes the bus was late, I alternated between pacing up and down the block and setting my bag down on the sidewalk to give my shoulders a rest. I hit the red zone of pain and let myself have a pill off schedule.
As I settled into my window seat, toward the front on the right to minimize the risk of motion sickness, a tall man announced in broken English, “I sit you.” And he did indeed sit me. I was shoved against the wall of the bus as he spread out and made himself comfortable, my right butt cheek riding the edge of the seat. I pushed back until I was all the way back in my seat. We exchanged hostile glances and looked away from each other. As he fell deeply asleep, his knees fell apart so one was in the aisle and one was taking up half my leg space. He did not wake up when I shoved my leg back against his.
I felt a pull on my right groin muscle and tried to shift around within the constraints of my seat area to ease it. The only relief came from wedging my bag between my thigh and the wall. Today that muscle has a deep ache even when sitting still, and I’m going to ride a bike all over the Saanich Peninsula this weekend.
On the way down, my seat mate and I had been relaxed and happy, comfortable with an occasional incursion into each other’s space, and I hadn’t felt the strain of sitting for 2 hours. I felt every minute of it going back. To amuse myself, I snapped a photo of my sleeping seat mate and posted it on social media, captioned “Manspreader.”
Back home, it was only 3:00 in the afternoon. There were still 2 hours left in the work day. My blog post was due. I turned on the computer and tried to write, but my brain was a complete blank. I went to my easy chair, called one of my cats over, and napped until dinnertime.
After dinner, I returned to the computer and tried to do some contract work that required less thought than this post. Nothing. My neighbor stopped by and I welcomed the distraction, sitting and chatting outside for a bit before I set to my evening chores.
My spoons ran out before the day ended, that was my problem. (If you’re not up on spoon theory, here it is again—this excellent article became an instant classic. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) I simply need more time than a typical person to accomplish the same list. I expend more energy in the process too. I imagine that’s true of most people in this audience. Our self-image is constantly challenged by those who judge us by “normal” standards.
It’s 10:24 AM and I’m already exhausted, but I’m determined to get out the door in time tomorrow—my cat sitter is fully booked for the next month and this is the only time I can go.
Do you find that time moves differently for you too? Tell us about that.