“how to fool a neuropsych exam”

To whomever found this blog by Googling “how to fool a neuropsych exam” yesterday:

Dude, you’re wrecking things for the rest of us. Cheating on a neuropsych exam (NPA) is no laughing matter, and given how difficult it can be to get real help — especially for those of us with legitimate issues of us who really need help — your cheating is helping the system to trash countless lives.

So, knock it off.

I have been wondering who searched on this term, and what the context was. Could be, it was a student athlete who needs to take an NPA, and they know they’ve been hurt but they still want to keep playing, even though doing so could cost them their health (even their life, thanks to second impact syndrome). That’s very unfortunate, and I wish to God I — or anyone — could talk some sense into that individual.

Or it could be someone who is trying to “game” the system and get some sort of disability compensation. That just pisses me off.

Or it could be someone who genuinely needs help, and their neuropsych is being a dick, so they feel they have to cheat – just to level the playing field.

In all cases, none of the scenarios are good – and they all have their own little tragedies wrapped up inside, just waiting to unfold.

I have a lot of issues with how things are set up for those who need help after TBI. Hospital staff often don’t know nearly enough to be truly helpful, rehab facilities have varied levels of quality, insurance companies are notoriously stingy, and general knowledge in the population is sorely lacking.

Our current “system” for addressing concussion/TBI is a partial solution, no matter how you look at it. The real problem is, people seem to think they are going to get all the help they need from the systems that are in place.

It’s not going to happen. These are all systems, and they cannot possibly meet all the needs of individuals who turn to them. The system is a collection of frameworks and procedures and approaches put in place based on knowledge from years ago, vetted by intensely risk-averse authorities, and implemented by underpaid people who often have huge gaps in their knowledge as well as a ton of compassion fatigue. They’re set up to deal with acute situations to keep you from dying and address the most basic initial problems, but long-term, they run out of benefits pretty quick.

So, if you’re looking to the system to help you with your most pressing TBI needs, I fear you’re going to be sorely disappointed. Maybe not in the first few days or weeks, but over the long term, the TBI/concussion recovery systems we have in place are woefully lacking. And the people behind those systems have a variety of motivations — money, power, influence, being a VIP, making a name for yourself, etc. Every now and then you’ll come across someone who genuinely wants to do the right thing for the right reason, but human nature being what it is…

Anyway, I can understand someone’s desire to “game” the system and cheat on a neuropsych exam. Sometimes it seems like the only way to get what you truly need. I know when I was first starting to look for help with my own TBI issues, my insurance would not cover me for the help I needed, unless I went to a neurologist and got an assessment. But finding a neurologist who would talk to me about TBI — who was in my network — was next to impossible. And then finding someone who could tell that I was having neurological issues, rather than mental health ones… that was a source of pain and hardship for me, for a couple of years before I finally got focused 100% on dealing with TBI.

The first neurologist I saw was a “TBI expert”, but they were in charge of the TBI group at a big mental health hospital (one of the best in the nation). Before long, I found the discussion moving towards mental illness issues, rather than TBI issues. Dude, I’m not here to talk about my relationships with my parents. I got clunked on the head a bunch of times, and my life is falling apart. Now.

The second neurologist I saw was a specialist in Multiple Sclerosis, which is in another ballpark entirely, but they were in my network and I had dealt with them before with regard to a family member’s neuro issues. I thought they might be sympathetic enough to my situation to at least listen to my issues, and my PCP willingly signed off on them. Unfortunately, I was in a pretty diminished state when I went to see them, they were suspicious of me because I’d gone to see the other neuro first, and the whole experience felt more like a colonoscopy than a consult. Dude, I’m not here to get drugs. I just need some answers with regard to TBI.

Yeah, it was pretty bad.

The thing is, I was forced into that situation because A) my insurance required that I see a neurologist before going to see a neuropsych, and B) my coverage also required that I stay “in network” and there weren’t any TBI-savvy neurologists in that network.

So, I was stuck. I did the best I could, but it wasn’t very good. And until I pitched a holy fit with my PCP’s office and demanded that they just sign off on the damned request to go out of network, and I found a neuropsych who actually knew how to fill out the forms, I was stuck dealing with these hostile individuals.

Who were probably hostile because so many other people try to cheat the system.

When you try to cheat the system, you just ruin it for everyone else. The thing of it is, the system lends itself to that, because sometimes it seems like it’s the only way to get what you need out of it. I sometimes wonder if it could ever work even if we all told the truth all the time. I’m not advocating cheating. I’m just saying…

Again, we come back to the underlying issue — that the people who are most in need of help, are required to step up and advocate for themselves and manage the whole neurological kit-n-kaboodle, exactly when they’re least likely to do that well. It’s like asking someone who’s broken their leg to run after a speeding ambulance in order to get treatment. You would never ask someone who’s broken all the fingers in both hands to sign a piece of paper with their precise signature, would you? Nor would you ask someone who’s blindfolded to direct a physician who’s removing a piece of shrapnel from their neck.

So, why are TBI survivors and folks who have been through concussion required to advocate for themselves and independently herd all the “cats” involved in getting adequate care?

It makes no sense.

Small wonder, people feel like they need to pull a fast one on the system, just to get their basic needs met. All the rules, the labyrinth of requirements, the criteria, the qualifications… who can make sense of it? Especially someone with TBI.

Of course, there are genuinely bad-hearted people out there who are trying to pull a fast one to get over on the system. But I’d bet good money that 9 times out of 10, the person who’s “cheating” is just trying to get their most basic needs met, and they neither understand the complexities of the system, nor are they equipped to deal with the ongoing intricacies. With TBI, you can think that you’re telling the truth and providing all the right information, but confabulation has you sounding like a bald-faced liar.

Not good.

On the other hand, once you get past all the system stuff and learn how to handle things for yourself, a whole new world of possibility opens up for you. And then true recovery can begin.

But first you gotta get there.

Speaking of getting there, the day is waiting. Onward.

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I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Getting beyond the broken to find the brilliant

I’ve been pondering a lot of stuff, lately… Going through the motions of my days, trying to see where things are working well, and how they’re working well… Doing inventories of my strengths along with my challenges, so that I can “map” my strengths to my issues and so find solutions to long-standing problems.

I’m working with my diagnostic neuropsych to identify the issues that were called out in my testing — in particular, issues with compromised attention, my difficulties understanding what’s going on at a given point in time (and which parts of that action really matter), as well as communication skills. It’s been pretty humbling, to sit there and find out that all is not as well with me, as I thought for so long.

Now, I have traditionally thought of myself as a fluent speaker and writer, but the more closely I look at my style of writing and speaking — especially when under pressure — the more I can see places where I could really use an overhaul of my skills. When I’m just chatting with someone or I’m blogging away, I do just fine and dandy. But in professional situations, or in situations which call for deliberate focus and economy, well, I’m kinda lost. I tend to ramble, throw out odd details, get sidetracked on tangents, and generally take a very winding, circuitous route to where I’m going… if I get there at all. I often get lost in the course of a conversation, and then I just let it drop. Like a rock. It’s a bit uncomfortable for people I’m talking to, I have observed, but I haven’t really known what — if anything — I could do about it. I didn’t understand the nature of my problems, and I certainly couldn’t figure out how to fix them.

It’s so strange to realize this now. Nobody ever really called me on my communication issues before. Maybe nobody noticed, so long as I was fun to talk to and my writing was entertaining. Or they didn’t want to put me on the spot and make me feel nervous or self-conscious. But now I have regular appointments with a trained professional whose judgment I trust, who’s calling out specific instances where my situation assessment and communication skills are a whole lot less intact that I’d like to think they are. And I can start to address them… and allow myself to feel nervous and self-conscious with someone who doesn’t judge or think less of me… until I figure out a better way to do things.

I have also never given much extended thought to my difficulties assessing the salient points of a passage I read in a book, or a scene I watch in a movie, or interpersonal dynamics taking place near or around me. I freely admit that when it comes to social interaction, I’m often in the dark and I take my cues and clues off others. And when I watch movies, I don’t always follow what’s going on (that’s why I always watch with other people — so I can pick up from them what is supposedly happening). And when I read a passage in a book and discuss it with someone, I often find that I don’t understand it the same way others do. Or I’ll go back to it later and realize I didn’t pick up some of the important points, the first time through.

All these things were just stuff I took in stride, over the years. I never gave much thought to them — perhaps because getting into it would have been upsetting and distressing for me… perhaps because almost nobody else ever made an issue of it, and when they did (some of my teachers over the years), I frankly wasn’t following what they were saying, so I ignored them.

It’s quite easy to ignore people you distrust and cannot understand — like most of of the authority figures I’ve known in my life.

So, I went about my business largely untroubled by criticisms from outside my head… tho’ inside my head, I had more than enough, thank you very much.

Anyway, now I’m looking at my real issues with someone who has a clue about them — what they are, what they’re about, and what (if anything) to do about them. And this person is also keenly focused on helping people be the best they can be, regardless of their history and limitations. We’re on the same wavelength, I do believe — both of us are convinced that people are capable of much more than they think they are. And I have this person’s help in addressing my broken parts, to get to the brilliance.

People tell me, “Don’t pay too much attention to what’s wrong… You might get depressed.”

Possibly. But it’s a whole lot more depressing to have all these issues — and never fully realize the nature of them. Or to muddle through life, wading through sludge, when you don’t even realize that you’re up to your thighs in muck.

Personally, I’d rather know what’s “wrong” — that way I can do something about it. You can’t fix something if you don’t know it’s broken. And if you never make an attempt to fix it, you may never find out just who you are and what you’re made of.

Being broken can’t keep you from being brilliant. It just makes the expression of that brilliance a little more … indirect. A lot more challenging. But ultimately, perhaps, a lot more rewarding, than if it all came quite easily to you.

Onward

How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

  1. Talk to people who have the same condition as you, who were successful in finding help.
  2. Talk to your local Brain Injury Association folks to find out where to look for help.
  3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
  4. Take notes on what they tell you.
  5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
  6. Never, ever, ever give up!

Normal MRI and EEG… or not?

One thing that has saved me from obsessing about my job situation is my neuropsychological fall-out from my TBIs. Not only did my partner finally (after more than six months) get to sit down with my neuropsych and start to ask questions from a qualified health care provider, but my copies of the MRI and EEG results/interpretations came from the hospital, and it appears that my tests were not 100% clear of all disruptions.

It’s been an exquisitely excruciating balance of good news and who-knows-what-kind-of news. And it has totally kept my mind off my job situation, which in my more vulnerable and fatigued moments just drives me ’round the bend. As much as I want to focus on my strengths and keep firm and steady, I still have a tremendous amount of insecurity around how my TBIs have affected me, work-wise, and I have deep-seated reservations about how well I’ll be able to perform, if I’ll be able to keep up, if I’ll be able to be the kind of team player I was before my fall down the stairs in 2004.

But things are moving along with regard to the neuropsychological exam, and good things are brewing there. That promise of improved coping abilities and good information made available in a way I/we can use it… as well as finding out I have a small pineal cyst, and learning that there was some rare theta slowing in one of my temporal lobes, have pretty much eclipsed my vocational concerns.

On an up note, my partner and I had a great session with my neuropsychologist last week. From the mouth of a professional, descriptions of my situation and my “challenges” sound a whole lot less scary, and my neuropsych had straightforward answers and suggestions, where I generally get turned around and agitated and even sometimes a bit combative when pressed for information. My partner got to ask the questions that have been burning in their mind for months and months, and they got total access to the doctor sitting across the desk from them. They got to see that my folder about my testing is 4-5 inches thick, and there are tons of tests I took, all of which rendered pertinent results. They got a real sense for how complex my situation is, and how good my doc is — how they really take their time and make sure they’re thorough and cover all the bases, which is a good thing.

I think it was a total relief for my partner, who was starting to think — I believe — that my neuropsych was lolly-gagging and taking their sweet old time. One other thing that was very beneficial was that the doctor had to take a call and talk someone through the steps of tracking down a loved one who was impaired, and keeping them from being a danger to themself. I’ve had appointments canceled and rescheduled with this doc numerous times, due to things like this, and my partner was thinking I was just being brushed off. When the phone call came in, they got to see the doctor in action and just having that experience really did a lot for their confidence in them.

I think my partner and I both have more good info to work with now, in regards to our marriage, and they can see that the problems I’m having are not necessarily due to my being deliberately stubborn and trying to yank their chain and ignore them. Yes, I can be difficult, but I’m a lot less deliberately problematic than my partner believes. I’ve been catching crap for years about being too inattentive, too oblivious, too lax, too lazy, too unmotivated, too absent-minded, too flighty… and now, at long last, I’m somewhat vindicated. They were told explicitly by the doc that I have trouble understanding spoken language in the moment, and it takes me longer to process information when someone is talking to me. All those times that I’ve gotten raked over the coals for not being responsive enough quickly enough can now be put behind us. We don’t have to do that anymore. And we can slow down. Something about having a doctor communicate the information I’ve been trying to convey over the past year is helping. I’m not going to question that. I’ll take it — it’s a gift.

On the other hand, my other doctor — the neurologist I saw in January and February — seems to have mucked things up a bit. I got a copy of the MRI and EEG analyses, and while they may read as “normal”, they are not without event. My MRI shows a small pineal cyst, and my EEG shows some theta slowing in one of my temporal lobes. In both cases, the anomalies are not great enough to warrant all-out alarm, but they are both something to keep an eye on.

In addition, the neuro wrote up notes from my visit and sent them to my PCP, and their description is not 100% accurate. They focused a great deal on the “rage” issues I’ve been having. I wouldn’t necessarily call them “rage” — just abrupt swings in emotion, in all directions. And they also mis-characterized my family history, making one of my relatives (who has had a lifetime of symptoms and experiences similar to my own, in some respects) look and sound like a rage-a-holic.

Oh        my        God…

Now I have to back-pedal and compose a letter to both my neuro and my PCP correcting the record. It sorta kinda freaks me out a bit. I’ve had so many unproductive relationships with doctors, I can’t even begin to say. Now, I finally managed to find someone I can work with and with whom I have established a decent rapport… only to have this neuro mis-characterize me and potentially undermine that relationship.  It’s bad enough that the neuro misunderstood me and is working off bad information. But now they’ve dragged my PCP into it, too. Ack.

So, my next steps are to communicate my situation in writing. I am going to:

  1. Work through this with my new therapist, who is a neuropsychologist themself, and who knows about TBI and can help me think through my response. I need to correct the record very thoroughly in writing and compose a letter to that effect.
  2. Send the letter to this neuro and my PCP.
  3. Follow up with my PCP about what to do with all this new information. I may need to do damage control. I want to keep the lines of communication open with them and make sure I’m not digging myself yet another hole.
  4. Probably find a new neuro. I really liked dealing with this one, for once, but they clearly were not present and were not dealing with what was in front of them. I’m not sure where they were, at the time we were talking… But no matter. They are so fired, and I’m off to find another neuro.
  5. Check in with my new therapist a lot through the whole process, to make sure I’m not making things worse for myself. That would be all too easy to do, and I want to do things different this time.

What this experience has really taught me — and there are some vital, valuable lessons here — is that I really need to approach my health care with my TBIs in mind. The biggest problems I’ve been having with health care, throughout my life, have revolved around communication. I have never had an easy time of describing my symptoms to doctors, nor have I done a very good job at collecting and analyzing information from them. I can see now that I’ve had a truly terrible time understanding what doctors are saying to me, parsing through it all, and then retaining it to act on it later.

And because I’ve had such a terrible time — all the while looking (to the untrained eye) like I should be more “with it,” so what the hell was I being such a freaking space-case about?and I’ve got a history of various trauma with plenty of PTSD to go along with it, I would get all revved and anxious and become either overly withdrawn or combative in this exaggerated fight-or-flight dynamic that probably every TBI/PTSD person knows all too intimately. And I would either come across as hostile and aggressive, or I would retreat into my shell and not speak up about what was going on with me.

Which never made for very good doctor-patient relations, I can tell you.

Now I need to take a different approach. Put the facts of my situation into writing. Take it slowly and deliberately and seek out help. Because at least that’s a way I can communicate with my doctors with 100% accuracy. And the next time I deal with any doctor, I’m going to summarize in writing my issues and give them to them — along with a note from my neuropsychologist that explains that no matter how bright I may look on the outside, no matter how extensive my vocabulary may be, no matter how conceptually “with it” I may be, my speed of processing is slower than one would expect, my ability to process spoken language in the moment is impaired, and my short-term memory is for shit. And I don’t mean to come across as hostile and argumentative — I just have a hard time dealing with my “asymmetrical” challenges.

The next thing I do  — after I correct the neuro’s info and send it to them and my PCP — is get a brief summary letter from my neuropsych explaining both the strengths I have and the limitations. I cannot see any more doctors until I have that in hand and I can give it to them in advance, so they can understand I am not malingering, I am not deliberately being difficult, I am not trying to make their lives more complicated, I’m not a malpractice risk, I just need help when it comes to communicating, and I’d appreciate it if they wouldn’t jump to conclusions about me, just ’cause I fell down and got hit on the head a lot over the course of my eventful life.

I am so done with dealing with doctors who don’t have all the information and can’t use their heads to observe what’s right in front of them. Maybe that’s not how medical professionals do things, but God gave them two eyes,  two ears, a nose, and a mouth, and it seems to have worked well for millennia, so why not avail oneself of one’s native abilities?

I’m also fed up with not being able to “read” what they are trying to communicate, and being held back by my broken brain’s penchant for meaningless detail. I’m tired of struggling with something I “shouldn’t” have problems with, getting lost… and not realizing I’m lost till several hours after I leave the doctor’s office.

I’m sick and tired of this whole hidden disability trip, all the ignorance, all the half-assed information, all the bias, all the cluelessness… and how the lowest common denominators seem to drive the situation. I’m tired of having to navigate the seas of truly debilitating difficulties, without anyone else realizing they’re a problem for me — and giving me shit because they are.

I am also fed up with doctors who don’t take time with me. I need to figure something out. I had considered double-booking appointments with my doctor — reserving twice as much time with them, so I don’t feel as rushed and I can ask all the questions I need to ask at a speed I can actually sustain. Either that, or I’ll get an “interpreter” to go with me and help me understand what the doctor is saying to me — and who can help me get them to slow down and stop rushing me. I think that having another person in the room with me to help me sort things out may be the way to go.

Honestly, does my health need to suffer, just ’cause someone doesn’t want to slow down? The rest of the world may think so, but I don’t. I’m just not going there. Something’s broken. And I’ve got to fix it.