Thinking about TBI “recovery”

Someone posted some great comments/thoughts on my blog the other day — https://brokenbrilliant.wordpress.com/have-you-experienced-a-brain-injury/ and so I’ve been thinking a bit about what it means it “recover” from head trauma.

I had a great visit with my neuropsych last week, and they actually told me that while I was completing their tests, I used some very effective coping mechanisms to answer the questions and complete the tasks, so my actual numbers are “inflated” (are better) compared to my actual abilities.

I used strategies like visuals to keep track of memory tasks. I also did things like not doing things in the proper order, so I could complete the tasks to my satisfaction. I improvised at times, rather than just doing straight-out what I was told to do. And it apparently made my scores come back higher than they truly are.

Of course, it’s a bit late to re-take the tests… eventually I’ll see a final report on the findings, and I’m kind of working at bolstering my self-esteem, so when I do find out what my scores are — or “should have been” — I won’t get too depressed over it.

I have to remember — I’m doing great — so great, in fact, that most people have no clue I’m a TBI survivor. But I know. And how do I know!

I’m really wrangling with the details of my own ‘recovery’ at this point — finding out that my coping strategies are actually a whole lot better than I ever suspected… and at the same time finding out that I’m a lot more impaired than I ever imagined I was. It’s such a double-edged sword.

The fact that I’m doing so well is both a testament to the power of the human spirit and will, as well as a warning shot across my bow, that I can’t afford to “buy my cover” and get too cocky. On the one hand, it’s evidence that I’m doing well, but it’s also a kind of proof that I’m not. At least not as much as I appear to be.

I think, for me, the real test of how well I’m doing/recovering has a number of different sides:

First, how well am I integrating with the rest of the world? How seamless is my interaction? Can I get through social and work situations without pissing people off and doing real damage? And can people even tell that I’m brain injured? It seems a little sad, that my true measure of success is not how GREAT I’m doing, but how well I’m managing to NOT do badly. But I’ll take it.

Second, how well am I monitoring my own situation? Am I factoring in my deficits, so I can avoid screwing up left and right? Am I being cognizant of my limitations, so I don’t overextend myself and get into trouble?

Third, am I remembering — in the process of dealing with others — to not buy my cover? I can’t afford to get cocky. That can spell disaster. I must always, always, always keep in mind that how I present has a lot to do with “theater” — that I’m playing a role in a world that doesn’t understand or make room for my limitations. And that this role is just what I do to get by. In no way, shape or form, should I ever lose sight of the fact that when I step out of my house, I’m taking on a persona for the sake of effectively interacting with an essentially hostile environment. It’s not 100% me — much of “me” I need to leave at home and swap out for a version of me that appears to be fully functioning. And at the end of the day (literally), I need to revisit my day and sort through what happened to make sense of it, parse out what my experiences were, learn from them, and remind myself that in some ways I’m doing better than one might expect, but in some ways I’m doing far worse than anyone else  realizes.

Fourth, am I able to do more than just exist? Am I able to go just one step farther in my actions and interactions, to make a positive contribution to the situations I find myself in? Am I able to help where I can help, and (at the very least) not hurt when that opportunity presents itself? Am I able to get something from the situations I’m in, too, so that my life becomes more than just base survival? Sometimes it’s all I can do, to keep up with a conversation or remember what happened a few minutes ago. But if I can at least come away from an interaction with someone having gotten something of value — information or a greater sense of connection — as well has having offered something in return, then my efforts are all worth it. Sometimes, I can’t do much more than a little bit. But if I can do just a little bit more than the bare minimum, then I figure the experience was a good one. Or at least a lesson.

Fifth, have I learned anything from all of this? I keep a journal, and I contemplate my life while I’m driving to and from work. I don’t always “get” everything that goes on around me, but really, who does? We all have limitations, we all have our issues. And on some level, we’re all essentially clueless in the grand scheme of things. That both frustrates and relieves me. As much as I would like to think I’ve got it all figured out — or that I eventually can — it also takes the pressure off for me to realize my limitations, especially when it comes to my brain. Great Mystery is just that — Great Mystery.

I guess at the bottom of it all, what saves me is Grace. And mercy. And hope. it doesn’t make  much sense for me to lose hope (permanently) because my broken brain gets signals crossed and it tends to think things are different than they are. I think things are worse than what they are, and I think that they’re better than they are. So, I don’t have all the answers, and it doesn’t make logical sense for me to lose hope and just give up.

Ultimately, it may sound cliche, but it’s not about the destination, it’s about the journey. It’s about finding points along the way that make my life wonderful and meaningful and educational and inspiring… Muddling through those places of confusion and frustration and taking something away… I’m “greedy” that way — I always need to have something decent to show for my hassles. And I’ve had so many hassles, I’ve got plenty to show for it all. Whether that’s “decent” or not, is anybody’s guess 😉

So, when all is said and done, and the day is over and I’m looking back on it all, even though so much is incredibly f’ed up, now and then, even though I’m confused a lot and am not following a lot, even though I get turned around and Angry!!! and scared and timid and incautious and foolhardy and so very, very tired… in the end, it’s all just experience. Good, bad, and a mix of all of the above.

It’s a good thing I like adventure 🙂

Light-sensitivity solutions

I have a friend who has an associate who has needed help for a long time, but apparently hasn’t gotten what they needed. This friend-of-a-friend (I’ll call them “Foaf”) is a very unhappy person who is just a drag, even to be anywhere near. I’ve encountered them in passing – literally – when we crossed paths in the past, and they had this really miserable vibe that totally turned me off.

My friend, who has a kind streak that’s almost super-human, has been trying to help them, with varying degrees of success.

A while back, Foaf informed my friend that they think they found out one of the things that has been making their life so hard to handle — when they were little, they got hit on the head with a baseball bat. And they think that their lifetime of problems could trace back to that experience.

My friend has been doing research about head injury, and I’ve been feeding them info as I go along. It turns out that my realizations around my own TBIs happened roughly the same time as this other person’s — was there something in the air/water? They’ve been able to pass along what I’ve given them to Foaf, and I think it’s been helping.

Now, over the course of the past months, my friend has mentioned a bunch of times that Foaf has trouble with light sensitivity. Their choices in life are actually pretty limited because of it, too. They cannot go some places because the lights are too bright. They have a hard time dealing with stuff in general, because of their light sensitivity. My friend asked, a few weeks ago, “Do you think this could have anything to do with their head injury?”

“Yes,” I responded emphatically. It hadn’t occurred to me that they might think it didn’t.

Light sensitivity is a common after-effect of head injury.

At the South Florida Psychology website, they list the following symptoms of post-concussive syndrome:

Symptoms of Postconcussion Syndrome

Symptom Percent of Patients
Poor concentration 71%
Irritability 66%
Tired a lot more 64%
Depression 63%
Memory problems 59%
Headaches 59%
Anxiety 58%
Trouble thinking 57%
Dizziness 52%
Blurry or double vision 45%
Sensitivity to bright light 40%

Even sensitivity to regular light could be a problem. And there are other issues as well, which are too many to go into at this point.

So, what can a person do about this?

Well, first of all

Understand that your vision problem may be neurological, instead of psychological. Nothing makes me crazier than thinking my head injury issues are because of some psychological problem(s) I have. I thought for years that my problems were “character defects” or evidence of mental illness that could be cured with therapy or support groups. While these things have helped me a great deal, understanding my issues as physiological ones lets me think about them differently and take steps to address them concretely, instead of trying to change my thinking or feeling about them.

Next,

See if corrective lenses help. There are a number of options you have.

Irlen Lenses can help. They “filter out the offending wave lengths of light which create [neurologically-based] stress” and givey our brain a break from dealing with crazy light frequencies that you can’t handle.

Amber sunglasses can also help — they are better at blocking certain kinds of light than the green or gray ones. I have amber sunglasses that I put on just about anytime I’m driving durin gthe day. Even when it’s cloudy, I wear them. There’s something about the wavelengths they block that is very helpful to me. In fact, when I’ve gone out on bright sunny days without them, I’ve had a tremendous amount of stress, and oneday when I was driving to work, I had a bit of a meltdown over next to nothing.

It puzzled me at the time, but when I think back, it was a bright, sunny day and I wasn’t wearing my sunglasses.

I’m not exactly sure how a person goes about getting Irlen lenses. I guess you’d talk to your doctor about it. For me, my amber-tinted sunglasses– and understanding that I have trouble with bright light — helps enough to get me through the day safely.

I told my friend about Irlen lenses and amber-tinted sunglasses. They’re going to pass the info along to Foaf. I hope it helps ease their discomfort and makes them a happier person. They deserve it.

Yes, I do have problems with getting mired in details…

From March, 2009 – I may have never actually published this…

I’ve been meaning to finish up my writing on “A Perilous Relief“, which is about how I use stress to relieve certain kinds of distress in my life, and how that works against me.

But then I got caught up in thinking about how TBI and PTSD intersect and feed each other. And then I got caught up in thinking about Tetris and how it might help relieve PTSD flashbacks. And then I got caught up in thinking about Natasha Richardson. And then I got caught up in thinking about my job situation. And then…

All of these are very interesting things to think about, and some of them (like job stuff) are quite valuable, if not essential. But in the process of researching the different pieces of these puzzles, I went down a bunch of rabbit holes.

What's been keeping me busy for the past while
What’s been keeping me busy for the past weeks and months

And the paths that used to be pretty straightforward and simple, have now gotten tangled and twisty and have intersected with other paths, so I’ve been wandering around this veritable “rabbit warren” of interests and — let’s face it — distractions.

It’s all very important to me, of course, but these different ideas have been competing for time and attention, and there’s really only so much I can do in any given day. I need to keep my household running, I need to do my taxes, I need to keep current at work, and I need to make sure I’m getting enough sleep each night and I’m eating well.

I need to square away some very basic needs which are not nearly as dramatic and entertaining as exploring my MRI in 3D, but which are essential to my daily functioning. And those things are getting lost in the shuffle. Kind of like “A Perilous Relief” has gotten back-burnered numerous times, since I started working on it a few months back. I know I need to mind my sleeping patterns. I know I need to take my vitamins regularly. I know I need to cut out munching on junk food at 3 p.m. each day (it’s making my tongue break out, in addition to making me feel bad generally). I know I need to help with cooking and cleaning and shopping and yard work. But I get so caught up in other things that I overlook them and don’t tend to them. And things start to fall apart around me.

Which isn’t so bad, when you’re cognitively fully-abled. But when you’ve got cognitive deficits and you’re susceptible to paralyzing anxiety and overwhelm, something as simple as a messy desk can throw off your entire day. And not being able to find papers I need in the construction disaster area of my office sends me into a tailspin that triggers my hot temper and makes me miserable to live with.

I really do need to tend to the basics. But I hate having to tend to the basics. I’ve never been good at it, and I feel it’s terribly unfair of the universe to force me to pay attention to that kind of stuff. For most of my life, I’ve been able to function well in the midst of mess and chaos. No more. Not in the past few years, since my fall in 2004.

I think this is probably the most frustrating part of TBI — not being able to take for granted the things I always did before. Like sleeping through the night. Like keeping my cool in tough situations. Like remembering whether or not I shampooed my hair in the shower, five minutes ago. Like understanding and remembering what was just said to me. I have to expend so much friggin’ energy just keeping up with stuff that everybody else seems to have no problem with — and the everybody else assumes I can do just fine — that it gets depressing, and I lose interest in it pretty quickly. It’s tough to sustain invested interest in stuff that you keep getting wrong, over and over and over again, till you spend much of your time demoralized over the littlest things. There’s only so much failure at fundamentals I can take, before I back away from my problems and avoid them entirely.

So, I end up neglecting things I should take care of — like my sleep schedule. Like my temper. Like my personal hygiene. Like asking for clarification while I’m talking to someone about something important. Granted, I’m not an exhausted, explosive, unkept, smelly one-sided conversationalist. But I could go there all too easily, if I didn’t keep track of where I’m at… and if I didn’t realize that I have these (and many other) issues.

When I slow down long enough to examine my life, I can see plain as day that all is not 100% perfecto in my life. I have many areas where I need help, and I get that. Finally, I get that. Having my neuropsych evaluation turn up hard data about me being really distractable, having a hard time with sustained attention, being prone to missing important pieces of information that are said to me, and having a Swiss cheese working memory that drops information (literally) in the space of a few seconds, has brought it home, loud and clear, that I can’t do this all by myself.  I am in fact impaired. I need help, God help me.

So, I’m now starting to find folks to help me with those things. My neuropsychologist has started to help already. And my new therapist, who has a neuropsychological background, has already helped with some communication issues. I’m also getting to a point where I’ll reach out to a speech pathologist to help me with my verbal comprehension and processing. It’s all coming together. With the help of others.

But for now, I need to tend to basics… finish my breakfast, take my shower (and shampoo my hair), dress for work, and go earn my pay. It’s not the most exciting prospect in the world, but it’s all got to get done.

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.