Brain Matters: Should Insurance Cover the National Average, or The Individual?

When did my blog get hijacked by Traumatic Brain Injury and Depressing Divorce Songs? I'd love to tell you that this is not one of the two, but I'd be lying. I have something more I feel I have to write concerning TBI.

If you've suffered a Traumatic Brain Injury, you don't even know what you don't know. Not being able to trust your own mind is a scary and often frustrating experience, by and large because you have to listen to and trust the opinions of others, since nearly everyone, not even just the experts, can see and experience how you are doing so much more objectively than you can.

Initially I just had to go completely on what everyone else was telling me. For months as I did test might be wrong with me, or could be wrong with me, like that my Executive Functioning might not be up to snuff, or that my short-term memory was so messed up that I couldn't be sure if I'd just said something or not. For awhile, it felt as if I were carrying around every single last one of the symptoms in my head. In truth, there were many things that I knew were not wrong, but quite a few other things that I just wasn't sure of. It was like trying to step through the woods on a dark black night. Oof! Just ran into a tree.

Now that the last of my test results have come in, I am happy to say that I know a lot of things with me are great, although a lot of other things are not. My neuropsychologist is an idealist and champion of hard cases like mine. He is intrigued that I'm intelligent enough that I could drop down from a Verbal IQ of 136 to a Working Memory of 86, because that's a 47 point drop. If we were to liken that to the Average IQ of 100 and I dropped 47 points, then I'd now have an IQ of 53, which I believe would have meant an adult foster care home for me. This is what he means when he says that I'm so lucky that I'm smart.

But here is where the problem comes in: Although I was smart enough not to be rendered incapable of taking care of myself, I still have a brain injury, I have still lost parts of my mind that I was literally attached to. Many of my test scores state that I rank as "Average." I don't mean to be an intellectual snob, because there I don't have a brain cell to stand on, but my neuropsychologist doesn't think it's fair to leave me at average when I used to be so much more. I feel as if people with real problems everywhere will be disgusted that I'm so worried about this, but the man won't let it go. He feels passionately that the point of brain injury treatment can be likened to any other kind of injury in that, if I had broken a leg and went to the hospital for it, the auto insurance would happily have covered the cost of getting a cast and healing my leg to be as much like it had been before the accident as possible. Not so with brain injury. In cases like mine, where someone who is "really smart," gets into an accident, the insurance companies have a harder time believing that the person needs all the therapy it takes to get their brain back up to snuff. From their perspective, if the tests come back average, then there's no injury to be healed.

Since I want to concentrate on these rather than dwell on anything else here's a breakdown of my strengths:

I got Very Superior Scores in --

1. Oral Information Processing. This means that I can now reason things out loud better than in my head.
2. Vocabulary. Not surprised. I'd venture a guess that this wasn't damaged all that much, although it has to be said that I often can't remember words that I used to know. If I want to say that I'm "annoyed" by a remark, I don't automatically say that I took "umbrage" because all I'll be able to come up with is "annoyed." Yet I'm sitting there saying to whoever I'm talking to, "I know that there's another word for that! It starts with a "U," I think...Argh!" (I know, I know: Cry you a river, right?)
3. Letter Fluency, in which I got a 98, but in Word Context I only got a 75, and in Repetition Errors, which was a similar test to Letter Fluency, I only got 50%. The inconsistency is due to brain damage. Now, maybe these are average scores, but the neuropsychologist says that I should have been Very Superior in all of these tests. He says my efficiency has taken a 48% drop! And I am not even getting into my mental health scores, because those are all skewed as well, resulting directly from the accident.

I got Superior Scores in -- 

1. My General IQ, which is now only in the 77th percentile even though the neuropsychologist's
   
   sliding scale puts it at around 136 pre-accident. See what I mean, though? I'm not sure how upset I ought to be that I'm getting Superior Scores instead of Very Superior. They are just numbers to you, but to me they're every day things that I used to be able to do, like reason something out in my head instead of having to draw myself illustrations or talk out loud -- or to spell without having to use spell check. 
2. My Right-Handed Tactile Form Recognition, but not my Left. On the right side I got a 90%, while on the left I got 19%. This, my friends, is due to brain injury.
3. Symbol Searching and Word Reading are both tests that have to do with Information Processing. These two were Superior, but in most of the other other tests concerning Information Processing, I scored much lower. It's what the neuropsychologist calls "a diffuse issue," because the scores range anywhere from 94 (Very Superior) to 19 (Mildly Impaired). 
4. He says that I'm good if I can lock onto one task and do only that, but as soon as you add any
   
   kind of multi-tasking, I get lost and overwhelmed. I see it every day when it takes me over an hour to do the dishes because I'm trying to figure out where everything ought to go, what order they ought to be in, and heaven forbid what other people are trying to say to me or what I'm wanting to mention to them, because I have to put my dishrag down and really listen, or talk, and not be doing anything else, or I will get confused. This is not my normal.
5. In Visual Organization I was Superior at Perceptual Reasoning and Visual Puzzles, Matrix Reasoning, and the Hooper Visual Organization test, although I scored a Low Average
   in drawing a clock and Moderate-Severe drawing a bike from memory! I'm an artist. I'm supposed to be able to do these things. That is brain injury.
6. Memory and Learning was actually all over the scale of score options. I got some
   
   Superior, High Averages, Low Averages, and Mild to Moderate to Severe scores. The tests range from being in the 91st Percentile all the way down to the 2nd Percentile. I am not joking, but I'm not officially discussing my Moderate-Severe scores yet. Superior scores would be anything visual that relates to memory. I can remember a picture I've seen very well, and recreate pictures that I've seen (Unless they are a bike, apparently). Did you know that the largest component that they use to determine your IQ is your memory? Well, mine is damaged.
7. In Language. Thank God my brain didn't injure my ability to communicate much. I've got quite
   a few Superior Scores, but I've got a localized injury that doesn't affect my speech production.
   The Neuropsychiatrist says that only a highly intelligent individual could come out of an accident like mine and still be average in so many areas related to language production. Is this Good News, or Bad News? I think I have to make my own choice and put on those ruby
   
   slippers and let all the bad curl up and pull back under the house. I'm not in Kansas anymore. In Oz, people have been known to turn into The Wicked Witch of the West and think that my ability to communicate makes me unentitled to any assistance from Glinda the Good Witch... I am actually quite amused as I find myself visualizing my Neuropsychologist floating down in a pink bubble wearing a huge crown, with golden curls instead of his shiny baldness. One can only hope that he never comes across this description of him. Maybe he'd change is mind about my having superior intelligence.
8. Under Executive Functioning, there's Verbal Concept Formation. These tests are half Superior and half Average. 

Well, at this point I think this entry is probably getting boring (Who really cares about all this besides me, my closest friends, immediate family, the neuropsychologist and my therapists?), so I'll skip High Averages and Low Averages and just cut to the chase with Mild and Moderate-Severe Brain Injury effects.

1. Motor Function. My fine motor coordination is Moderately-Severely damaged, and my gross motor coordination is Mildly damaged. These do play into my driving skills, although currently the insurance company is fine with having me out on the road. 
2. Attention and Concentration. This is the worst of it. I thought I was joking when I said in a

   

   Symptoms of ADHD

   previous post that I'm ADD now, but I'm now officially considered ADHD. My working memory, symbol span, attention capacity test (8 standard deviations below the norm),  and visual ADHD scores are all Moderately-Severely damaged. Other areas are mildly damaged, such as my listening skills and spatial attention. Earlier tests all confirmed this information. Right now, I can not switch quickly from one task to another without getting lost in where I was. Tonight I was having that problem while on the phone talking to a man I've been dating. It's later in the day, I'm tired, so I kept losing my train of thought.
3. Visual Organization. I touched on this earlier. I couldn't draw the bike or the clock from memory. In these skills I range from mild to moderate to severe.
   
4. Memory and Learning. These are skills I need to finish my Master's Degree. My Logical Memory is Mildly Damaged, while my Visual Working Memory is SO low that I only got a 2% and a 4% ranking. It's all connected inside our brains -- the memory and attention and the eyes, etc. I find it fascinating at the same time as it is alarming. There were apparently perfect scores in memory tests where I had to remember certain patterns. Visual-Spatially I was very intelligent, but I scored as Mildly Damaged in recall testing . I scored a flat 16% across the board even though in the different tests I was supposed to have my scores move upward as I
   was repeatedly shown the same information. 
5. Impairment Measures. My Neuropsychologist says that there is a set of tests that are very detailed and sensitive, acceptable by corporations and courts of law, one of which is called the Halstead Impairment Index, that I only did well on half of the questions/measurements (0.5), leaving me with a Diagnosis of Moderately-Severely brain damaged altogether despite what anyone else thinks, because a score of 89 functional IQ is not okay for me, is not my norm, and I should not settle for it. I am so conflicted about this. I've been trying to accept that I have a brain injury and that some of it is never going to come back, and the therapists all agree on that, but this man who specializes in the diagnosis of brain injury rather than just the treatment of it is telling me that it's not true that I have to settle for anything. He is fighting for me to get the best possible care, and he is the only one.
   
   Who is right? What is right for me? I don't think any of us are raised by parents who tell us to strive for averageness. It's always excellence that is the goal. It's really hard for me to be okay with this when I've got someone, anyone really, on my side who says that brain damage is brain damage, and it shouldn't be measured by anyone else's brains but against my own. 
6. The Achievement Tests.Reading, Spelling, Arithmetic. They're all average. The Independent Examiner had me take all these tests, too, and he feels this is fine, whereas my Neuropsychologist says that the Independent Examiner "Doesn't 'get' that a highly intelligent brain like yours should not have to slow down to take timed 6th Grade academic tests."  ["Except possibly in Math," I would add.]

The final area of concern for me -- one that I asked for an explanation and clarification of how these

scores relate back to my everyday life in practical terms -- is my Executive Functioning. It's something my family and I have been worrying about all along. Just how altered is my ability to, say, manage my own bank account, do things independently, and reason out complex problems? On one test I scored Moderate-Severe. I made 60 errors when I shouldn't have made even 40 errors on that kind of test.Then there was a whole battery of tests in which I scored "Average," but my Neuropsychologist contends that they're "pedestrian" scores for a College-Educated High IQ." Gotta love a man who thinks so highly of my intelligence. It's quite touching, really. 

Another series of tests related to Executive Functioning were quite fascinating in that all my verbal right-brained comprehension scores were really high as compared to my non-verbal left-brained scores. I wasn't very efficient, but I did manage to get through those tests with average scores. The

one my sister has drawn an illustration of is labelled "Toddler Stacking Toy," because it is, and I was Mildly Impaired on that one. I remember it very clearly, because it was a toddler toy, and I had to really think to come up with the right sequences and strategies to stack them from biggest on the bottom to smallest on the top. This is probably my strangest test result of them all. I could not reason out in my mind how to get those stacked the right way following the rules I was given. The rules were: 

1. You can only move one piece at a time.
2. You cannot rest a bigger piece over a smaller piece.
3. You have to get all the blocks to stack in the center, from biggest on the bottom, to littlest on the top.

I remember feeling embarrassed or almost ashamed that I couldn't do it as quickly and easily as I had expected. I was really sweating it out at one point. 

"What do I do about the fact that I was incapable of completing that 'Move-Accuracy Ratio" test?" I asked the Neuropsychologist concerning this stacking humiliation. 

He replied, "You remember that you have a much easier time with verbal reasoning than non-verbal reasoning, so when you're trying to work something out, you benefit by running it by your sister or another trusted friend or advisor."

This is actually something the Cognitive Therapist has been having me do. I feel stupid when I'm
doing it with her, because she'll have me playing a game or working out a puzzle and I'll have to tell her out loud what I am working on and why I am doing it the way I am, what order I'm planning to go in, and how I'm going to keep track of where I left off if I get interrupted. To me it feels as if I'm moving my lips while reading. I think of how ashamed students are who have to do this in the higher grades, because it marks them out as poor readers immediately. Just now, as I am typing this, I suddenly understand those students so much better. They have to read out loud to visualize and comprehend what they're reading.

They are like me.

It doesn't mean that they're not intelligent.

It just means that they process information differently than the majority does.

I am going to be one bad-assed teacher once I get through all of this and get to teach again!

Ultimately, it doesn't really matter what the Insurance Company thinks, my family thinks, my friends think, or even what my Neuropsychologist thinks.

• Ultimately, this is all just statistics and labels. What I can and can't do is all up to me.
• This experience will make me a better teacher.
• So memory and learning are going to be a little harder, so what? Because I am a teacher, I know how to learn new things. I can apply what I'm learning to my life.
• I've gotten quite a few Special Education credits, and credits for a Reading Specialist endorsement. What I have found in these studies is that the strategies that help students with special needs are strategies that would help anyone. I'm not ashamed to use them. I'm starting to test them out myself. That's just good teaching. In general I would advise that you never ask someone to do something that you wouldn't also ask of yourself.
• I am strong enough and smart enough to figure out what I do and do not need and believe.
• Do I want Justice done? Yes, but if it doesn't happen, I can learn to be content with what I've got because whatever it is, I am not average in any way that matters. Ask anybody who knows me and they'll tell you.
• My reality is valid. I'm the one stuck wearing the ruby slippers. I have to walk my own way home before I can learn the lesson from this strange and interesting journey.