I was hit—very hard across the head, so that it felt like a bowling ball.
That was my childhood.
Over 50 years later, in my mid-50s, I am struggling with brain damage, various symptoms of which are physical and emotional, and with repercussions that are social and affect both relationships and work.
I am sitting in a restaurant. And trying to listen to the person across the table. My head is being confused by the sounds around me. I’ve had my hearing tested many times over the years and have been told, “There is nothing wrong with your hearing.” Yes, but all these sounds in my head together are confusing. So I’m listening to my friend and getting distracted by conversation over here, over there, and it’s hard to focus on my friend. Sounds like an echo in my head.
I played softball in my teens. Outfield. I was good at outfield, and could focus on a flyball like no one. But every time…every time…someone came up to bat, I had to stand out in the outfield, and very slowly go over in my mind what would happen if, let’s say, the ball was hit to me. And someone was on second base. I had to remember that the runner on first base would run to second, the batter would run to first (whom I could ignore initially), and I would have to try and throw the ball to second base on time to get the runner out, or else they would go to third. Then (difficult) I would have to make the decision to either throw to third to get that runner, to second base if the batter headed to second (no, that’s the wrong decision—need to catch the runner closest to home)—this is EXHAUSTING!—or try to throw to second or third if I couldn’t throw hard or fast enough to catch the front runner…this is REALLY exhausting. And I can’t do this FAST. I’m getting exhausted and overwhelmed just writing this! I remember standing in the outfield and going through all these options and it was like slow motion in my head. It’s very hard to think through the myriad of difficult movement possibilities.
But I’M NOT STUPID. I always had good IQ scores, even in the 120s. When I was ten years old, I was reading 300 page novels. So what’s WRONG with me? Nothing.
Several years ago, in the process of dealing with chronic illness and disability and having my body break down in other ways, I met for five years with a disability specialist who had experience with many different disabilities. We spent five years of me being frustrated, not just with the breakdown of parts of my body, but with our communication, trying to explain to her the frustration of trying to communicate with people out in the world. To explain things, like I can’t understand people who talk too fast. I can’t easily track conversations between two or more people. Social events like parties are hard. If there are other conversations in the background, it’s overwhelming.
It’s like, I can hear the words, but can’t understand them. Snatches. And I often misunderstand people as a result.
So after five years of talking through this with her, she looked up at me one day and said, “You have brain damage!”
Someone I had met several years earlier had suggested I research high-end autism, in case the problems I had were this. I did, but the descriptions didn’t fit me. Frustrating was having able-bodied friends who kept trying to convince me that I was imagining things: this was all probably emotional; work on that, and this will go away.
Well, it hasn’t.
My guess, from what I am finding out now, is that the topic of brain damage is so embarrassing and shaming in our culture that no one, certainly not any of my friends, wants to believe I have it. That we are stupid or less human; or cursed, or have spirits controlling us.
This is frustrating.
The worker who explained brain damage to me said there are two kinds: problems with information coming into the brain, and problems with getting it out. We can have both kinds.
When she explained the “problems information out,” I started crying.
I can hear the information in my brain I want to tell someone…answers to a question, a response to a piece of information shared…but I CAN’T GET IT OUT EASILY. It could be fear, yes, but I work on that. It feels like it’s stuck in some part of my head, and it won’t come out of my mouth easily.
If someone continues to talk while I’m trying to say the information, it’s even harder.
This is like playing softball. Trying to take in information and trying to get it out, almost simultaneously.
So what do I do now?
She had this suggestion which I’ve put to work. Ask people to slow down, to wait while I answer, and to give me a chance to speak.
She suggested talking to people at the speed I need to hear them, so that they know the speed I need.
I . . . would . . . like . . . you . . . to talk . . . more . . . slowly. Two . . . or . . . three . . . beats . . . between . . . each . . . word.
Even the size writing on my computer is an inch or more high because the large letters seem to slow down the information.
I’m going to stop writing now because this is a bit much information to be sharing, and for those of you for whom this is difficult (including me), it could tire you out.
Let’s say, I’m practicing talking with people about this, teaching people about slowing down speech and conversation; I ask people when possible to stop talking while I am trying to answer, and I’m practicing helping people, including myself, understand that this is a physical problem.
Cheers to our great brains.
L.A. Reed is an artist, writer and computer teacher.