I’ve been trying to stay focused on creating posts that are more about central pontine myelinolysis, what to expect, how to compare it to other brain injuries. I’ve been trying to stay away from writing about me.
Frankly, you can only take so much of listening to someone go on and on about horrible things are in their life. It’s hard living through it too, but most people don’t really care, and they don’t want to feel “bummed” about how bad someone else has it, so I’ve tried to refrain from going on and on about my feelings or my struggles with EPM. Tonight, I have to discuss about what’s going on with me.
So, you might be wondering, what’s wrong?
Today, I was told that the “basic” cognitive testing that I had a few weeks ago, showed that I have significant impairment, but that it’s not consistent. Basically, the doctor felt that my symptoms are being created or exasperated by psychological issues.
I have to say that I agree that stress, fatigue, and anxiety the issues I have worse. Isn’t that true for anyone? Even if you don’t have any brain injury, you’re just perfectly normal, doesn’t stress, fatigue, and anxiety make issues worse?
I’ve never been a strong test taker. Never. I was usually one of the last kids to turn in a test. The last college classes I took, I would run out of time, especially in chemistry. I was usually one of only 4 or 5, still taking a test at the end of the exam period, out of more than a 100 or more. I felt this was because of my perfectionism. In reality, I would just tend to over analyze questions. I would get stuck and read over the same question over and over again because I thought that there were multiple ways to interpret the question.
I have found since I’ve had the brain injury, I’ve had more issues with this. It becomes harder for me to shut off the internal dialogue I have with myself over directions, questions, etc. I will tend to confuse directions for one section of the test with other sections. For example, if you ask me to name all the animals that I can think of, my mental gears start spinning: birds. Well, birds aren’t really animals are they? Aren’t they considered more along the species of reptiles? They have a connection to dinosaurs. Do they want specific animals? Like Robin? Robin is a type of bird. I wish I could look up whether a bird is really an animal. Aren’t animals considered types of mammals? There are marsupials. I wish I could look up the answer. I really don’t want to sound stupid by saying birds if birds aren’t really animals. And what if they want specific animals. Aren’t animals any living organism? There’s different types of Kingdoms. Shit, I’ve studied this stuff, why can’t think of the right answer? Humans are animals. Maybe I should just say humans. Good answer! My answer is humans. How about insects? FRICK!
SO, that’s just an example of how my mind works in the moment of answering ONE freaking stupid question….and they want me to to name as many animals as possible, as quickly as possible! It’s just not that easy any more. I used to be able to shift gears faster, think through things more quickly, and get to an actual correct response, but I don’t have that ability any more. I get caught, stuck.
Another example, they asked me to count the dots in the following pictures one by one, or maybe they actually said individually. I’m not sure exactly how it was worded. The first problem I have is, is staying focused and tracking the dots. The first group was scattered dots everywhere on a page. There must have been 20 or more. They weren’t organized, and when I started counting them I lost track of where I began, and I wanted to give the right answers, so I double counted them. I thought it was the answer that was important, but it was actually the amount of time that it took that they were monitoring. The next pages they started organizing the dots into groups. My first reaction, well that’s a group of five. There’s two groups of five. There’s three groups of three. It’s a total of 19. Wait, they said count them individually. Maybe this is an illusion. They have those optical illusions where your mind looks at something and doesn’t process it correctly. Did I miss a dot? So, I counted the dots a second time. No, no I think there aren’t any that I’m missing. Are you sure? Yep, I’m sure. Ok. 19 is the answer.
So, if I had known that the answer didn’t matter, then I would have just blurted out numbers. If I realized that it wasn’t a trick question, I would have been able to respond more quickly. If I had just asked for clarification or asked them to start over once, I figured out what I was supposed to do. Frick!
Trust me. I feel stupid over the testing. I don’t know why that part of my mind is broken. I mean, I did have that problem to some extent prior to the injury, but at some point, my reason would take over, and I would just be able to answer the questions. I would be able to shut down that internal dialogue, and just take a test. At the very least, it didn’t interfere as much as it does now.
In other words, I was never quick at taking tests, but now, I’ve become discouragingly slow. It’s just harder for me to process information, directions, to figure out what I need to do and then do it.
I am going to say, in my defense, that I had only had four hours of sleep that night. I really wish that they did testing around the times that I’m normally awake. If I don’t fall asleep until 4 or 5 am, and I’m scheduled to take a test at 9am, I’m practically set up for failure, but they don’t start testing in the afternoon. Two pm would have been the best time for me, but doctors do testing around a typical 9am to 5pm schedule, not a 2pm to 10pm schedule.
So, what does all of this have to do with me?
The testing I did reflected poorly on me, and so my integrity has been questioned.
I am so extremely grateful that I know what my issues are, and that my friends and family believe me and know. My cognitive therapists and occupational therapists believe me and see the struggle that I experience, and they believe me.
It really seems that the testing itself is the only thing that doesn’t work in my favor, but I just don’t think that the tests account for the type of mental distractions that I have because of the brain injury. Well, I had these some of these issues before, it’s just so much worse now.
In the end, getting this news just stresses me out even more, but then I begin to regain my composure. I don’t really care what the tests say. I know what’s going on with me, and that’s what matters. I just have to brush off this bad news and regain my focus. Keep on, keeping on.
I know stress, fatigue, and anxiety complicate my problems, but I’ve always been able to work around those issues. They’ve never stopped me from doing what I wanted or needed to do.
They are causing issues now, and I’ve tried everything I can to control those factors, so that I can become more functional, but they aren’t the cause of the deficits that I have, and it has left me exasperated and frustrated.
Let me give you an example of how people can misinterpret a problem. A man is having a drink at a bar. He’s chatting with his friends, and as he gets up to go home, his friends stop him and ask him if he needs a ride home. They suggest that maybe he call a taxi. He feels insulted because he’s only had one drink. He refuses the taxi. The next night, at the same bar, he sits down to have a drink. After a glass of wine, he gets up to leave and another person suggests that he not drive home. Again, the man scoffs at the suggestion. On the way home, he gets pulled over by a cop. The cop believes that the man is drunk. The man refuses to take sobriety test. He feels angered at the fact that people keep suggesting that he’s drunk. Since he refused to take the sobriety test, the cop takes him to jail to sleep it off. The next morning, they find the man dead in his jail cell. He wasn’t drunk at any time. He had had a stroke.
How do I feel that this story relates to my experiences? It is not uncommon for people to look at someone with a brain injury and because they do not see any physical injury on the outside, they assume that there is an external cause to the problems that you have. You don’t really have memory issues. You’re just stressed. You have trouble with concentration and reading because you’re mind is creating those problems, because you are focused on issues.
It’s so easy to judge someone when you’ve never experienced the same problem. It’s easier to put on a filter and say that these issues are mental when you’ve never lived with them.
I’ve been told by so MANY people that they’ve forgotten to pay bills. It’s normal. I’ve forgotten where I’ve parked. It’s normal. I’ve forgotten to take my medications. It’s normal.
Yesterday, I couldn’t figure out how old I was! I’m 35, and I forgot. I wasn’t sure if I was 33, 34 or 35. I could not figure it out. I forgot my son’s birthday. I forgot the significance of 9/11 (also my son’s birthday).
THIS is NOT normal for me! This was not who I was before the brain injury. I worked full time. I went to school full time. I took care of the bills. I did NOT have these issues. I’ve never ever had to have an 80 year old man have to shuttle around the parking lot trying to find my car because I couldn’t. I could do advanced math in my head without any issue. I could figure out patterns and trends. I could read through law books, Title 21 of the federal code of regulations. Shakespeare was like a Dr. Seuss book to me. I could spend 6 to 8 hours reading through legal cases. I could spend 10 to 13 hours studying for the MCAT while working 32 hours or more in a week. What I live with now, IS NOT NORMAL FOR ME! I’ve always lived with stress, but it did not cause impairment.
To have some guy read through one to three tests and can tell me that he has my brain injury figured out, TOTALLY pisses me off. The most brilliant scientists in the world do NOT have a great understanding of how the brain works. They don’t! Were the tests even designed for a person who has a brain injury? Does it take into consideration that the person has an issue with understanding directions, language, or writing.
I had cognitive testing done BEFORE my brain injury, and I would have difficulty completing tasks in an allotted time. I was able to get the puzzles, etc correct, but not within a standard time frame.
I was told by my cognitive therapist today that I was right. A few months ago, I told her that there is a belief that over time a person’s brain can turn to mush after they’ve had a brain injury. In a person who has had CPM/EPM who lives for longer than a few years, when they move the brain at autopsy, it crumbles. It turns to mush.
When I told my cognitive therapist this, she told me that it wouldn’t happen. (She has been working as a cognitive therapist for more than 20 years. She is an expert.) She went to a conference this weekend, and they are finding that these injuries can kill the brain slowly over time, that the brain can calcify after a brain injury. She told me that I was right.
In the end, what can I do? I have to keep moving on, but tonight, I raised my hands up to God and cried. (I don’t cry often because my immune system causes issues after.) I don’t understand, why?! WHY? Why do I have to live through this? I’ve already had a pretty tough life, but to go through this too! Why God? Why do I have to go through this too?
Can’t I just be normal again? God, I would give anything to have my old mind back! I wish I could just put this whole brain injury thing away! I wish I could get back to doing what I wanted to do. I just want to go back to school, get into medical school, work at saving people.
I wish I knew why. I wish I could just get over it, as if I was getting over a cold. I don’t think they understand how frustrating these things are for me. I don’t think they understand how strong I am, and how hard I’ve worked, and how desperately I want to put all of this behind me, but it isn’t just a mental thing. It’s just not, and I have to learn how to work with the deficits I have and try to make the best of my life and my abilities as they are. I will continue to work with my therapists in trying to get new connections, with my doctors to get on the right medications, and try to become the closest to my old self as I can. I guess that’s all you can do when you’re living with a brain injury.