Tag Archives: My Brain Diary

Posts chronicling my progress from diagnosis of an intraosseous meningioma through surgery and recovery

Jul23

My Brain Diary, Part 14

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My Brain Diary, Part 14

And maybe, I hope, the last. Unless something miraculous happens and there are significant improvements or something terrible happens and I need more surgery. Neither case is very likely. Things are pretty well stabilized and my MRIs continue to look good.

It’s still very frustrating that my brain doesn’t work the way it did before. People see me and talk to me and say how amazing it is, they would never know I had a problem. I respond politely because their intentions are good and they can’t possibly know how much more difficult certain things are. I guess it’s a good thing that I have ADHD, because it’s taught me how to accept that I can’t change and figure out ways to compensate instead. That doesn’t mean I have to like it!

The anomia comes and goes. I’ll have days when I’ll forget most of the names of people whose faces come into my head, not be able to tell anyone what a thing I want or am looking for is called, or even identify something I’m holding in my hand verbally. But since it happens so often, I don’t get as agitated when people try to help me by suggesting words (that are often wrong) while dredging through my memory for a connection that’ll bring the word to the surface.

I’ve learned little tricks to work around my still slightly impaired sense of direction. Most of them involve planning ahead. That’s not my forte, but I try. When I don’t, I turn on navigation on my phone. I need to look at a larger picture to get a sense of relative position of everything, so even when I’ve already been somewhere I might pull out a map and spread it out so I can position the place mentally among multiple spots I’m already familiar with.

Since the last Brain Diary, I’ve been to school for Cosmetology and am waiting for my license to arrive any day (week, month. . .) I know, it doesn’t sound sciency at all. You’d be surprised, but that’s beside the point. Learning new things and performing services with my hands was not only great occupational therapy, but also gave me insight as to some particular effects I need to work around that I might not have noticed otherwise. For example, at the beginning, I would need to hold a picture of a hairstyle up to the mirror next to my mannequin head so they were both facing the same way, because I couldn’t mentally flip images. I still have to do some extra thinking sometimes, especially if I’m looking at something that’s asymmetrical, and sometimes I need to have my hands on a head at the same time as I’m looking at a picture. I also need to go very slowly right now to create symmetry, because as I go from one side to another my visual perception and body angle change unless I pay very close attention to altering my posture and directional gaze.

I simply can’t “do the same thing on the other side.” Braiding taught me this in a singularly humiliating way. I needed to find something that stayed the same no matter which hand was working because no matter how hard I tried, I couldn’t mirror what my right hand was doing with my left. If you watch me as I do it, you’ll see that I don’t hold my hands or the hair the same in both hands. The harder I try, the worse I do, and the more frustrated I get. I need to look at it almost as if it were two separate things I was doing. I described it to my fellow students as if I was trying to make a braid on two different heads, one hand for each. (Plus, I need to learn this for each different braid, and there are lots of them.) It was the first thing we learned, and the last thing I figured out. I’m still a ways from mastering it, and if I make up a stunning new design, it’ll be completely by accident!

This distorted sense of spatial relations is even worse on myself. Yeah, everyone says they have trouble doing their hair or makeup in the mirror, but I remember what that was like. It was like what I deal with now when working on someone else. Just like with the map, I need to establish points of reference that are outside myself that I can associate with one another. If the main point of reference is ON ME, that just can’t happen. I have become less inefficient at doing my own hair, but it’s still kind of comical how many different directions my comb and brush will go on different areas of my head and how many things I hit with the blow dryer that are not anywhere near my hair. My style is different every day because I can’t do it the same no matter what. I let people think it’s all creativity, but the most creative thing is figuring out how to get it to look like I did it that way on purpose. More often than not, I had an idea, tried to do it, then pulled out super strong holding products for damage control.

The other things I tried to do on myself were very useful for pinpointing specific deficits. I got it into my head that fake eyelashes would be better than mascara, and spent countless hours trying to put them on, went through three tubes of adhesive, and threw out 8 pairs of lashes and three packs of individuals before I gave it up. Towards the end, I realized that not only does my right eye not close independently without squinching it up tight, but it has weird “blind spots” where I can see colors and shapes but not “understand” what they are. I would finagle my way around getting a lash strip on my partially-open right eye, but when it came to the left, these “blind spots” made it impossible to put one on. I’d try with the left eye open enough so I could see through it, but each time my hands or wrists covered one eye or the other, my “sense of direction” would change. I’d have the strip placed perfectly, say, on the outer corner, but once I moved towards the center and one eye or the other was even partially blocked, I’d start pulling the strip in the wrong direction and sticking it to the middle of my eyelid, the tips of my lashes, or even pulling it off. It was during one of these frustrating sessions that I stopped and just covered and uncovered my eyes one at a time and realized that the world moved in different ways from one eye to the next and made more sense in the left than the right.

Makeup is a bit more symmetrical now, but that also took some training. Initially, I had to use pencils or chopsticks or other long, straight guides to make marks on my face, and even then I would end up with one side higher or lower than the other, farther out, closer together, darker or lighter. I still have to step back frequently because up close the right and left sides are perceptually disconnected. I won’t lie, there have been a lot of tears. When you’ve been doing something for 30 years with almost no thought at all and suddenly it requires slow going and meticulous attention to seemingly superfluous details, it makes you feel impaired. Even if it’s just something as silly as having to give up eyeliner because you can’t draw a single smooth line on your face anymore.

The good thing about this is that with the improved awareness of what’s doing what, I am getting better at accepting and compensating for my new set of neurological differences. They’re not going to change, or they would have by now. So here I am.

Apr11

My Brain Diary, Part 13

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My Brain Diary, Part 13

I went through a long day of neuropsych testing, and it was quite interesting. Obviously, I can’t reveal everything about the experience, because you don’t want people who might go through the testing themselves to know too much. What I can say is that even during the testing, I could tell which areas were giving me particular difficulty – and after the testing, I started seeing some patterns in specific difficulties in performance among different tests.

Some things were obvious. Verbal memory was horrendous. I already knew that I’m having more trouble than ever remembering things that have been said to me, but one test involved repeating a very short story back to the examiner after she read it. On the first go-through, I repeated only the general ideas, and had trouble remembering enough to answer questions about the stories. On the second go-round, I remembered even less, and had trouble answering questions even with prompts. Other parts that required memory were not quite so abysmal, but it was clear that I was having some trouble.

When I went in for the evaluation, the neuropsychologist pointed out that other parts of the tests showed something much more telling – my pattern of answering, and the difference between tests with and without feedback, indicated that I had a big problem with impulsivity that was impairing my performance. Some of the tests were observed and some were just me and a machine of some kind, and the performance differences and the way I responded while observed showed some significant anxiety.

I don’t know if that’s an inherent anxiety, or just the anxiety that’s been overwhelming me for the last several months, but I have to tell you that I thought that I was cool, calm, and collected the whole time.

Some parts of the test were taken from IQ assessments. I performed quite impressively on those – but I’m not surprised because I already know my IQ and I know I’m intelligent. I swear I’m not bragging – it’s just a thing about me that is. But what this meant to the doctor is that my results on the other test segments compared to the intelligence parts demonstrated that I do have impairments that are functionally significant.

We’ve had a couple of counseling sessions, and will continue once a week for a while. Once I have the right medication and get my depression under control, I’ll probably undergo some speech therapy and occupational therapy. Since there doesn’t appear to be any lesions on my brain, there’s a possibility that my brain is plastic enough to re-learn some things.

Patience is not my strong suit. Obviously. But this is sort of like parts of my brain fell asleep from the pressure of the tumor, and the pins and needles stage is going to last for a while. I need to shake it out a bit. And put up with it until things start working again. Also not one of my personal strengths. Since I have no choice, though, I suppose that eventually I’ll learn.

Feb26

My Brain Diary – Part 12

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My Brain Diary – Part 12

I’m trying to think of ways to keep my expectations reasonable and realistic. This is really difficult, because I really thought that the problems I had from the tumor would clear up so much more completely after it was gone. What this means is that when I notice an improvement but still have problems, I get frustrated and depressed thinking of the remaining shortcoming and forget about being happy for what I’ve recovered.

Well I was going through photos and happened to find one from a year before my surgery when I had a grand idea that I was going to use Photoshop to try out potential hairstyles. It was pretty bizarre, because I don’t have too many photos of myself, and the changes I saw in the mirror were gradual enough not to notice. I was shocked at the asymmetry, and no matter how hard I tried to make the muscles in the right side of my face mimic the ones on the left, I couldn’t – and I had no idea why this was happening. I don’t know how long I hadn’t noticed it, either. But anyway, the heck with vanity, here’s a side by side comparison of the photo from November 2011 on the left, and 2/26/2014 on the right.

droopface

My surgery was October 12, 2012. 16 months later, you can see that I’m still somewhat lopsided. If a simple muscle function doesn’t return completely, then it’s reasonable to assume that the cognitive deficits are going to fall short of what they used to be as well. I can look at my face and think, “Oh, well, I guess it’s stuck like that.” I think I need to try to change my attitude towards the other things to something more along those lines. I got used to the different face. Even though it doesn’t impact me as much as the different speech and the different memory and the different visual perception, I still need to get used to those being different too. I need to accept them even though I remember what it was like when they were better.

I hate talking on the phone. On the phone, I can’t make gestures to try to get across the word that I’ve lost, and I can’t look it up in Google without breaking up the conversation. I just sound stupid. This is frustrating because I’m just as intelligent as I was before, but you wouldn’t know it if you were talking to me on the phone. In person it’s only slightly better because, you know, I’m forgetting words and playing Charades to try to get you to understand what I mean. This is why those of you who don’t email or Skype me haven’t heard from me in a while. It’s frustrating and embarrassing, and that’s harder to get over than a lopsided face.

The memory and visual perception are easier to deal with, and are also something that the neuropsych will be able to help me with over time. Still frustrating, but easier to use the face analogy to tolerate.

Just complaining. Only a few more weeks before the testing and evaluation. I can show people my droopy face as proof that I’m not stupid, just slightly brain damaged. But not on the phone.