My whole life, I have been an accident-prone, clumsy person. So much that I have been told often it would be a lot safer for me to go about life inside bubble wrap and a Tupperware container. While working in restaurants I always had a new cut, bruise, or burn. I had whopping cough, two surgeries, and a black eye all in one year. It almost wasn’t a surprise when, over the summer I was diagnosed with a traumatic brain injury, post concussion syndrome, and suspected chronic traumatic encephalitis. I wasn’t ready for what that was going to mean for my life. Right away I had the obvious headaches, brain fog, confusion, light/noise sensitivity, exhaustion. I could make it about 6 hours before I needed a nap desperately. I started seeing doctors and they told me to rest and wait it out.
It is months later and I feel like what I mostly do is still rest and wait. Some of the exhaustion is better. I am no longer falling asleep in a chair despite my best efforts. It is also different. I am the kind of exhausted that makes my body feel heavy and I’m not sure I can move at all. After a certain point in the day I am no longer functional which takes a lot of socializing out of the realm of possibility most days. Sometimes I am so tired it feels like I am breaking down and crying for no reason other than exhaustion. If I push myself too far over my limit, the small amount of memory I can retain is gone and I wake up the next day with a blank from the day before. Light and noise are still a problem so I try and make sure I always have sunglasses with me, especially for department stores, and recently bought myself very cushioned headphones to muffle some of the sounds around me. It is not an ideal look. Neither is never leaving my house. I forget words, will know what I want to say but the connection from my brain to my mouth doesn’t make it so it comes out wrong, or what I say is correct but doesn’t sound correct to me so I repeat it to be sure. Simple things, memories, reading, multitasking confuse me some days. It will feel like somewhere in my brain I know exactly what is happening but there is fog on the inside of my brain so I can’t access any of the things needed to help me think. It is easier to hide if I am sending a message to someone. I can go back and look over what I have written. Hide how many times I have hit the ‘B’ key knowing full well I wanted ‘P’ my fingers just couldn’t make the leap. I drop things, not in the same way I used to. In a way that feels like the signal going back and forth to my brain saying we are holding this thing stops working and all of a sudden I am no longer holding it. It is the same way for getting dressed too. Sometimes I try and put my clothes on backwards or sideways and have to give myself a few minutes and start over. There are days I have to skip showers simply because it takes so much out of me. I often have to sit down while showering from the energy it takes. Making decisions takes so long. I’m not sure why there are so many kinds of cereal and juice in the grocery store but my goodness it is hard. Food, in general, is hard. Whether is it from a menu or at home.
I am in recovery from an eating disorder but there are still some things that linger. I have to really ask myself before making a food choice if I want something savory or sweet, how hungry am I, what else have I eaten today, what else will I eat today. Since the brain injury, I have lost some of my sense of taste and what I can taste has changed so much I have to relearn the foods I like and don’t like. If I have a bad headache that day I also have to avoid anything too crunchy, which is also complicated because sometimes crunchy can substitute in for what I can’t taste. Things I used to like have become so awful I have found myself spitting them out or I can’t taste them at all. I also have lost most of my sense of smell, my hearing is off, and color hues have changed. I have been told all of this just happens with a TBI.
I am only a few months out from when this happened. It is so new so I still have a pretty good idea of what I was capable of pre-TBI. So does everyone else. Those two things may be the most frustrating parts of all of this. I look fine. As I well know, that word ‘fine’ is what ruins people. I even can act fine for a little while. Some of that is because I have days where I feel as close to ok as I am going to feel. Some of it is because I am still working on how to not cover up. I lived a lot of my life with some combination of mental illness that I covered up so well. I was one of those people that no one had any idea. I don’t wear that as a badge of honor. That sucks that I did that to myself. It is hard to unlearn that. I am trying. I am also trying to not be so hard on myself. I have to relearn my life. It is not that I can’t do things, I just have to figure out how to do them differently. I am learning that it is ok to ask people to have some patience with me, even on the days I can find very little for myself. Other people are going to take more time since they aren’t around as often as I am around myself. Like anything people can’t see right away, this is going to take some adjusting, and a lot of unveiling.