“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.

Making room for more

And so another small chapter draws to a close, and a new one opens. Today I am finally going to start my vacation. The past few days have been pretty difficult for me, being off work notwithstanding. Since Friday night, we have been hosting a friends, in one capacity or another — there’s the friend who showed up on Friday night and has been staying with us at the vacation rental, whipping up drama along the way and generally being underfoot. There’s the other friends who came out for the evening last night and had dinner with us. And then there are the friends who are on the phone, calling and checking in and needing something when we get back next week.

It’s been a rough several days for me, with Saturday through yesterday (Tuesday) not giving me much rest or a break from constant stimulation. And it’s been driving me nuts. I am so exhausted, my spouse doesn’t seem to get how fundamentally fatigued I am — not just today, but in general — and that I need rest and quiet for more than an hour at a time. And for some reason they don’t get the idea of long-term sleep deficit.

How ironic. When they are just a little bit tired from an exciting day, they will sleep for 12 hours and not think about it. But when I’ve been going full tilt boogie for weeks on end, with maybe 5-6 hours of sleep a night, they still expect me to be part of their late-night plans.

Frankly, it makes me want to divorce them. I can’t live the rest of my life exhausted, and I feel like they have just used me up and are ready to throw me away. I was so tired the other morning, after being constantly pushed, and being woken up at 5:30 by them being up and about after staying up all night, I just snapped and flipped out at them in that way that makes them afraid of me, and has them “handling me with kid gloves” for days on end.

I just need a break. From them. From the people. From the distractions. From the social activities that give me no enjoyment, only drag me down and make me feel broken and inept.

I need some solitude. But at the same time, my spouse still needs me to help them do the most basic things, like put on their shoes and eat regular meals, because they either cannot reach their feet from back pain, or they cannot be bothered to keep on a regular schedule.

I don’t know. I don’t want to sit around bitching about situations that I have helped to create. I’ll have to find a way to work with this, if I want this marriage to work. For the most part, it does, but there are some things that are so critical as to be non-negotiable. At least, they should be. Like getting adequate sleep and recovery time.

The real problem is not with my spouse, however. The real problem is with me – not being clear about what I need to do and have to take care of myself, and not speaking up for myself. It just depresses the hell out of me when I have to fight for something as basic as a good night’s sleep. It seems like the sort of thing that should be self-evident and go without saying. That, and routine.

But my spouse doesn’t see it that way. From their perspective, my need for structure makes me a “Nazi” and it ruins their spontaneous fun. They like to just go with the flow… as though the world were made up of limitless time and money and resources. And if they don’t get what they want, then it’s a cruel crime being perpetrated on them to make them unhappy. Everything is personal with them. And they get very peeved very quickly… and they’ve very vocal about it, as well.

The thing is, I knew a lot of this when we first met. And back in the day, it wasn’t a problem. It was just one of the things that made them… them. And I loved them for it. Time change and people change, of course, and ever since my TBI in 2004, I have had less and less patience for that kind of behavior. Also, since commencing my recovery in 2007, I have really changed a lot, becoming less and less like them, seeing how a lot of our behavior has been really unhealthy and outright harmful.

And my tolerance has dropped through the floor.

Which is never good. Ultimately, as much as I carp and complain about the traits and qualities of others, the real issue is my tolerance level, and my ability to take care of myself without someone else thinking for me. It’s just part of being alive and being an adult, of course. And it’s not like I’m being held against my will in a horribly abusive situation.

Far from it. I just need to tweak a few things and more actively manage my own fatigue levels.

I need to keep myself from getting this tired, this delirious, this fragmented. Of course, the past several months have been sheer hell, and those types of conditions don’t happen all the time, so this is a bit of an anomaly. I know how to recover from this. And I will recover. It’s just a matter of managing it better.

And also making room for it, when it happens.

Some of the things that have made this time even more challenging than it has to be, are:

  • I haven’t made sure that I got enough rest each and every day. I haven’t communicated clearly to everyone that I need to rest, when I need to rest, and I’ve pushed myself harder than I really should have.
  • I haven’t worked out with my spouse the “terms” of my recovery. My exhaustion has sort of blind-sided them, when it’s come up, because they think about their own needs 99% of the time, and if I don’t tell them over and over what’s going on with me and what I need to do about it, they get very angry and resentful towards me.
  • I haven’t made it clear to people just how exhausted I am — most of all my spouse. I’ve just been pushing myself on adrenaline, and at the same time my gears are pretty much stripped, I’m still exceeding the proverbial speed limit — in 2nd gear. To all appearances, I’m still functional. I can still drive. I can still walk a straight line. So, I should be fine, right? Not exactly. Judging by my appearances, my spouse has been very unclear about the problems I’m having, which has made it tough to communicate to them and manage their expectations and also carve out any type of relaxation time for my recovery.
  • I am still pretty much in denial about living with a narcissistic borderline sociopath who lies and cheats and steals to get what they want out of life, and lives on the edge because that’s the only way they can every feel truly alive.

The last point is the main one, which makes things difficult. I just need to face up to the fact that I am married to and living with someone who has been deeply, deeply wounded in the past, and is still hobbled by their scars. I cannot even imagine the hell they went through as a child, even from the partial details I know (which is not everything, because they can’t remember a lot, themself). Their old wounds refuse to heal — in part because from what I can tell, they cannot bring themself to face the whole truth about their family situation. And they keep going in spite of it.

That last bit is what I need to focus on — the fact that they keep going, no matter what. Because as difficult as it can be for me to live with them, they actually do a lot of great work with people. The work they do with others to help them heal has literally saved lives. And there are countless people with a similar background, who have been helped — really restored to life — by their influence in their lives.

And this is what keeps me in this marriage, continuing on, despite the harm and pain and struggle. Because what comes out of this marriage is life-giving and restorative for many, many people far beyond the domain of our relationship. And as much as I complain about their negative traits, the positive traits are what help keep me alive. I wouldn’t still be here, if it weren’t the case. In fact, this blog is happening and helping people, because of the stability and support that comes out of the good parts of this marriage. My spouse doesn’t know I maintain this (as far as I know), but the support they offer and the help they provide does keep me going.

So, this marriage isn’t just about us, it’s about the work that we both do. And the stability of this marriage, for all its ups and downs, makes it possible for us both to do our work.

The main culprit in this dynamic is intolerance, judgement and fear. It’s me getting uptight when I hear them making up stories to make other people feel better, or to get their own way. It’s me focusing on the negatives instead of the positives, and making things much worse than need be. It’s me not taking care of myself, not accepting the fact that I need to sleep — a lot — and I need to be proactive in my management of my own issues. It’s me not including my spouse in my recovery and recruiting their help in getting me back on track.

Yes, they do have some serious mental health issues. But at the same time, they do an awful lot of good in the world and they help an awful lot of people on a regular basis.

Nothing is 100% good or 100% bad. There are up-sides and down-sides to everything. I just need to find the up-sides and stick with them.

Because ultimately, making room for the “bad stuff” helps the good stuff happen all the more.