What is a Brain Injury anyway?

What is a Brain Injury Anyway?? By Li Sa renraW
Adapted from "The Spoon Theory" by Christine Miserandino

My best friend and I had plans to catch up over lunch. But that morning I woke up with “it”, you know it well, horrible brain fog. I knew it was not safe for me to operate a vehicle that day so I called her to see if she would pick me up. She happily agreed. Upon arriving at my house she found me just standing there staring at my purse. “Need help?,” she asked. “Ummmm, no just a few minutes.” She knew enough to be quiet and let me figure it out. I surrendered and grabbed my checklist for leaving the house. One by one I methodically followed my list. I was toward the end when I said, “Cell phone,” that's what I was looking for.” The hunt began. We located my phone. I only tripped a few times as my overloaded brain caused my weak left side to slightly drag my toe as I walked. She watched me now out of breath, not from being out of shape but from my brain being overloaded,. I fumble with my keys to lock the door because my left hand was balled up in a fist that refused to open despite the brace I wore. She drove silently to the restaurant and we found our usual seat, the quiet one in the corner away from the windows. I sat smiling, taking deep breaths enjoying time out with a friend who at the very least respected my limits. I could tell she had something on her mind. She finally asked, “may I ask you something that won't be easy to answer?” “Of course, ask anything!,” was my response. “Well, I know the symptoms of your injury and how you like me to deal with things like when to just be quiet. But, what is it really like living with a brain injury. What does it feel like to struggle so much?” That's when I remembered an analogy I had just read called “The Spoon Theory” by Christine Miserandino. I was going to try it out for myself. I grabbed all the spoons around me and handed her the spoon bouquet. She didn't even flinch, I was always doing odd things! I explained that these were all the spoons she had for one day. Everything she did would cost her a spoon because with a brain injury you had to think about everything, every step all day. She jumped right into her day and I began removing spoons for the simplest things. She began questioning me. I explained that she lost her executive function and had to relearn all the sequences of everything like a child. You don't do anything automatically, it has to be carefully thought about. When she needed to go downstairs she lost a spoon. This one she fought for. I had to explain that she struggled with balance. Alternating her feet while she stepped was no small task. And, did you realize you have to change strides when going downstairs? Of course not, your uninjured brain does that for you automatically. Mine no longer does, and I need to actually think about stepping instead of walking. I didn't even bother explaining that all this thinking would lead to a left hand now so tightly wrapped around the railing used for stability she would need to stop and pry it off before continuing. I told her she could skip going downstairs but she would just loose a spoon fixating on whatever it was she wanted down there in the first place. “What about taking a nap?Can I get a spoon back if I get some rest??” “I wish, taking a nap will mean you can hold onto the spoons you do have left. Skip resting and you might as well throw those spoons away now!” By the end of our imaginary day she knew from breakfast that skipping dinner was not an option, pills needed to be taken or you might as well give up your spoons for the rest of the week. So, she opted for an easy bowl of cereal, it worked. I didn't mention that she was probably too tired an nauseous to cook anyway! She stopped and looked at me with a tear in her eye, “You really have to do this every day?” “I don't have a choice. Some days I have more spoons than others but I can never make it simply go away, trust me I have tried.” I handed her one more spoon I had been holding onto.“ I have learned to always have a spoon in reserve. One of the hardest lessons for me has been learning to slow down and learn I simply can't do everything, or the way I used to do it. I just wanted her to understand that all the little things that everyone does so easily are like a hundred little jobs in one for me.” What other people simply just do, I have to plan it like I'm strategizing the winning touchdown in the Superbowl. I knew I needed to turn this around and find something positive for her to take home. “Think of all the time, all the spoons people waste every day. I can't do that. I don't have the luxury of wasted spoons so when I choose to use one, it is meaningful. Today, I chose to use one to be with you!” some parts copied and adapted from “The Spoon Theory by Christine Miserandino.

That is how I feel about volunteering. It is worth every single spoon I have chosen to use.

Thank you!

** Sweet story about the spoon I am holding up. Dear friends of mine asked me to be in their wedding. It was something I wouldn't miss being a part of for the world. But, to be fully present I was going to have to limit the events I went to leading up to the ceremony. They graciously told me to do what I had to but I thought they need a better explanation than the one I gave them about cognitive fatigue and how even though it look and can fake being fine for short amounts if time there is always so much more going on than meets the eye. I sent them a copy of “The Spoon Theory” by Christine Miserandino. As a gift for being a part of their day I got an engraved spoon that said “Thank you for being our friend.” They understood the cost and gave me a spoon for my reserve as a memento.