You know how there are dog years and human years? A thirteen-year-old dog is old, but a thirteen-year-old human is not.
There is also cerebral palsy time. Generally speaking, people with physical disabilities use more energy than their able-bodied peers to do the same tasks. I don’t know for certain how much more energy I use to walk a mile than a nondisabled person. But I’m pretty sure it’s a significant amount. My fitbit says my heart rate is 90 or more, while my husband’s is in the neighborhood of 70.
Spoon Theory was originally coined by Christine Miserandino when she was trying to explain to a friend what it feels like to live with lupus. It’s meant to help someone understand invisible disabilities, or conditions that are disabling but are not immediately visible. It has since been applied to disabilities in general, and some even embrace the term “Spoonie.” I do not, because I do not need any cutesyfication of my life.
Spoon Theory goes something like this. Everyone starts out the day with a certain number of spoons. Various tasks use up various numbers of spoons. When you’re out of spoons for the day, you are done. Let’s say I have twelve spoons. For me, taking a shower uses up two spoons, getting dressed one, putting on shoes, one. Getting to work could be one or two or three, depending on whether I walk or bus and whether I have a seat on the bus or stand. So let’s say I’ve used up six spoons and it’s only 8:30 in the morning. Time to start my day. Able-bodied people maybe use–one or two? So, I don’t shower in the mornings. I conserve those spoons for the work day and shower later. Cooking takes spoons. Standing, chopping, getting chopped food into pot without spilling. Going back and forth for ingredients and utensils. Emptying the dishwasher, as I’ve described before, takes spoons. Laundry. Spoons. If you sleep well, you can replenish your spoons. If you don’t, you may start out the next day with fewer spoons. Chronic pain affects sleep, etc. etc. Some days might be better than others and you seem to use fewer spoons on the same tasks.
Story time: I stayed with my sister for a week and did the cooking. We picked out some tasty new recipes that were more complex than my usual beans-and-rice fare. Her kitchen is way bigger than mine and I didn’t know where anything was. Sure, new recipe, bigger kitchen, and new layout will take some getting used to. But wait, the stove is in the corner, with no countertops next to it. It’s one of those cool antique gas ones, and I literally cannot touch its surface safely once the burner is going. So I’m supposed to bring a dish of mixed ingredients/liquids over to a bubbling pot and pour it in. Remember, I have trouble stopping my body’s forward motion. Enough with the excruciating minutiae. The meal took many spoons.
Sometimes I feel like I should/could be doing more. I work 23 hours a week (well, I did when school and tutoring were held in person). I know that all of you who work full time and more can hardly imagine the luxury of working part time. So much time to fill with all the things you actually want to be doing!
But really, when I make it through the day, even if that day ends at “only” 2pm, I feel done. Twenty-three hours in CP time has to be close to forty in able-bodied time.
Most nights, I call from the bedroom to my husband in the living room, “Did I make it?”
And he’ll respond, “9:02.”
“Yes! Good night.”
Sometimes, it will only be 8:43, and I’ll have to make myself stay awake for seventeen more minutes.
Functioning takes energy. Fatigue is real. Pain is real. Working part-time is okay. A person’s value is not measured by how many paid hours are in their day. That’s a hard one, American people, but it’s true.
Not all disabilities are immediately apparent like mine. I’ve had to grow and learn and discover that there are many, many conditions out there that are disabling. What’s more, chronic conditions are loads of unpredictable fun. People can feel okay to walk one day, and need assistive equipment another.
If someone uses disabled seating, or restrooms, or parking–believe them. Remember that you do not know this person or what they live with or what it feels like to inhabit that body and that brain. Let’s all try to be kinder, more empathetic. Let’s all try to imagine others complexly.
What Happened to Your Legs? 