by Toni Popkin
Many people have heard of “The Spoon Theory” by Christine Miserandino. (www.butyoudontlooksick.com). She wrote the article to explain what living with a chronic invisible disease is like.
I have a Traumatic Brain Injury (TBI); more correctly I’ve had four— three from cars crashing into mine (none my fault), and the most recent from passing out and hitting the front of my head full force on the door. I use to use an analogy of money in the bank to explain how I and other TBI survivors who look fine can be out in public one day doing something, and then “paying the price” for days afterward. My explanation goes something like this:
Think of my energy as money, either cognitive or physical. I have X amount of money in my bank account. Everything I do uses much more than someone who has not had a brain injury. Actually, due to the cumulative effect, 1+1+1 does NOT equal 3; I’m using a ton more with everything I do. If I have only taken out of my bank account without putting back into it through rest, water, good nutrition, and quiet time, my account becomes overdrawn. Then I have to pay a penalty, usually a large one.
That lunch you saw me at with friends — those two hours took about two days’ worth out of my account. And I’m not counting showering, deciding what to wear, driving there, or using a cab if I’m tired. Restaurants have a ton of noise., Most people can tune it out or aren’t even aware of it. My brain amplifies it. Then you have several conversations going on at the table. The music is booming. Children are screaming. The menu has tons of things to read in order to choose what to eat.
Now to how this ties in with The Spoon Theory: Like someone with a chronic invisible disease, my invisible injury makes it hard for people to really, really put themselves in my shoes and understand what I mean when I say I’m on overload from doing what a “normal” person doesn’t find taxing. Or why on some days I’m able to go somewhere and on another am not able to go to the exact same place: I’ve used everything in my account already. The problem arises when, to look at me most of the time, you would think I’m fine unless you know what signs to look for.
Someone sent me this visual graphic illustration of The Spoon Theory. Take a look at it while pretending you are in the shoes of someone with a TBI. If it would cost you one spoon to do any of these things (or maybe none), multiple that by three or four for someone with a TBI. Some days an activity will cost us more to do than doing the same one on a different day. See how many spoons you would use in my shoes.
The next time you see someone you know who has had a Traumatic Brain Injury, please don’t say “I do that too” when they tell you they forgot something or whatever. It’s not the same. They do it because they have nothing left in their account or no spoons left for the day. You, on the other hand, do it as part of a normal aging process. They don’t want sympathy; they only want people who they care about to understand and try to accept this is their reality.
Toni, along with her service dog Bud, live in Alexandria, Virginia, where she advocates and educates about service dogs and about people like herself who have a TBI.