Last week was a WEEK! One of those week’s where the days feel never ending and you swear time is just standing still. It was one of those weeks thanks to my broke down brain. I think what we tell ourselves about ourselves is important, but the phrase “broke down brain” both adequately describes how my brain feels and it also makes me smile. A+ therapist is not on board with the “broke down brain” phrase and would prefer I say something like “My brain struggles with things it didn’t used to”, but lets be honest that phrase isn’t nearly as funny as saying my brain is broke down.

I spent 6 hours at a neuropsychologist’s office last Tuesday being interviewed about my cognitive difficulties and doing HOURS of cognitive testing. The neuropsychologist wanted to “fatigue ” my brain to see how it reacts. I didn’t have the heart to tell her that many days normal daily tasks fatigue my brain, so it’s not a high bar to reach. While my mom and I were interviewed about my cognitive changes I sat there thinking “How am I 37 years old in a neuropsychologist’s office for cognitive decline?” I’ve had many moments over the last almost 2 years of this health journey where the reality of everything that has happened and everything I am experiencing just smacks me in the face like I’ve been hit with a 2×4.

After the interview we began the cognitive testing. The lady administering the tests said some tests would be easy and others would be difficult, but to just do my best. She was wrong. They were all difficult. I don’t remember them all, but I do remember a couple of the test. In one test, she read me a five sentence story and then asked me to tell her what I remembered from the story. I remembered maybe one of two sentences worth of information from each story she had read minutes earlier. In another test she read a list of words and asked me to tell her the words back. We did this particular test 5 times in a row. I’m sure the hope is that by like the 3rd time of hearing the same list of words the patient will be able to repeat all the words back. I didn’t ever remember all of the words from the list. Finally, she showed me pictures and asked me what the name of the item in the picture was. One of the pictures was two animals that looked like cows with something over their shoulder area. Now, to be fair I have ZERO experience with farm animals, so I think it’s a little presumptuous to think I would know farm items. Apparently the item was a yolk. Why she couldn’t have shown me a picture of an egg yolk in a pan I’m not sure.

I left the testing with a headache, my body feeling exhausted and dizzy, and a lot of anger. Anger at my illnesses. Anger at the way they have altered my brain. Anger at all that has been lost. Anger that I’m in this situation. You get the idea.. There was a lot of anger. I also felt scared because the testing validated the very real cognitive struggles that I navigate on a daily basis and I couldn’t help but wonder what does this mean for my future?

Those of you who know me who are reading this I know may be surprised by some of these struggles because you don’t always see them. You see and/or experience me taking part in conversations, but don’t see the ways I blank out during a conversation and silently hope that whatever I’ve responded with fits with what was said before. You don’t see the struggle it is to concentrate when there’s sounds, lights, talking, etc going on around me. There are times I end up with a headache and nausea because I am trying so hard to focus and block out the sounds of the environment around me. You may or may not have experienced me saying the same thing multiple times or asking the same question multiple times. You also may or may not have experienced playing the game of “Guess What Word Sara is Trying to Say.” It’s a really fun game that is a lot like charades where I try to act out or describe the word I am trying to say. I know it can be hard to understand if you don’t see the cognitive issues in our interactions, but know that the symptoms don’t have to always be on display for them to be very real.

I go back to the neuropsychologist on July 9th to get the results of the cognitive testing. It is a day I am dreading and will do almost anything to get out of. I don’t want to sit in an office and have another doctor tell me all the ways in which getting sick with Covid-19 has completely changed my body and my life forever. While there is research the brain can rebuild pathways there is also research that many people with neurological symptoms from Long Covid have their brains changed in permanent ways. My biggest fear is I will never work a full time job again due to my broke down brain.

I don’t have any words of wisdom because the truth is sometimes life brings us things that are absolutely terrifying and we have no choice but to face them even while our knees are shaking and our insides are doing a Simone biles esque floor routine. Glennon Doyle says “We can do hard things.” To all of you having to face/do hard things, I see you, I feel you, and I wish you the best.