I know people can joke about brain fog, but I can personally say that it’s not only real but incredibly frustrating. Throughout the past two years, my physical body and mobility have deteriorated significantly. Yet, mentally and cognitively, I was staying sharp.
Over the past few weeks, sometimes my mind goes completely blank. Often word finding can be tricky and overall concentration becomes difficult. To me, experiencing brain fog is at times more terrifying than being confined to a bed or depending on a tube for nutrition. It makes me feel stupid and incompetent even though I know deep down that I am not.
Undoubtedly, there is a lot of physical pain in my life right now. There are also little miracles and happy moments. I get to spend more time with my siblings and some days have enough energy to watch a movie. When this happens, my entire family will get cozy in my room and my younger brother Sutton will set up the projector and stream movies for us on my bedroom wall. I wear lazy reader reflective glasses that allow me to stay horizontal while watching a movie.
A lot of my time is spent crocheting while listening to intriguing podcasts and captivating audiobooks. Usually, I have at least two books going at the same time: one physical book and an audiobook. I’ll listen to the audiobook if my vision is poor, and if noise is bothering me I’ll read my physical book. Also, I play cards on my phone against my grandpa and Backgammon with my dad.
The proverbial “make lemonade out of lemons” is what I am trying to do. Psychologically, it’s helpful to focus on what I can do, and not what I can’t do. Actually, the list of what I can do is a short list, so this mindset is not only more positive but most efficient.
New doctors on my medical team are dedicated to improving my quality of life, and I’ve made many amazing friendships with other girls going through similar health struggles. I may not be getting a traditional, classroom education, but I am learning so much about what it means to just be a good human and who I want to be. Focusing on other things and others is therapeutic.