Invisible Me – The interactive dynamics of a doubly-hidden disability.

Hidden disability is an “interesting” phenomenon. On the one hand, a person can have real and serious issues with interacting with the world around them, be it due to a neurological issue or a physical one. But on the other, the rest of the world cannot see what’s going on, and because people tend to be very visual — especially when they first meet someone — and they work off visual clues to figure out how to interact with someone, if they cannot see your difficulties, they may have a hard time:

  1. believing you have something going on with you
  2. figuring out how to interact with you effectively

I have heard of an individual who was legally deaf — couldn’t hear a thing — but had become so adept at reading lips, nobody believed they were deaf when they first met them. And stories abound about people who are autistic or have some learning differences, who are not recognized as having difficulties by the mainstream, and so cannot get the help they need.

Having a brain injury can be about the most extreme form of hidden disability I can think of — and that’s not just because I’ve had ’em. Think about it — the brain is something we ALL take for granted. It’s perhaps(?) THE most important organ in the body, when it comes to regular functioning. Yes, you need properly functioning lungs and heart and other internal organs to stay alive. But the brain is what pulls it all together and keeps us off life-support and a (semi)vegetative state.

Our brain is what makes us human, in my own estimation.

And yet, we know so little about it. I’m dumbfounded by the degree of ignorance that prevails about how our brain works and what it does. We all have one, we all rely on it, we all use it constantly. Yet, how many of us truly understand our own brain? And how many of us are prepared and equipped to explore its inner workings? It just amazes me, that we don’t know more about it, in this age of digital imaging and info gathering. We can collect moon dust and photograph stars and new planets in distant galaxies, but we don’t know how our friggin’ brain works? What’s up with that?!

Anyway, I’ll redirect my outrage, now…Β  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! πŸ˜‰

Anyway, when the brain starts to malfunction — especially after a relatively long time of behaving normally — things can get very difficult, both inside and outside. The rest of the world can’t necessarily see that you’ve got hurdles to cross in your daily life — cognitive issues, physiological issues, emotional issues… And when you slip up, people can be pretty hard on you. If they can see that you’ve got a limp or you’ve lost an arm, they can adjust their interaction with you (tho’ lots of people don’t do a very good job of adjusting in a positive way, and some mean-spirited people just use that as an invitation to be cruel or ignorant). But if they can’t see you’ve got issues, then your interactions with them can become… well, problematic.

Now, let’s add to that mix some of the interior problems that come with having an impaired brain.

Take, for example, the condition called “anosognosia“. This really fascinating condition is literally not knowing that there is something wrong with you. The injured brain doesn’t register that there are difficulties in its experience. It won’t realize that, for example, the left side of the body is not moving, that you’re not taking care of one side of yourself, that you cannot do certain things, that your judgment is impaired… all sorts of things can slip through the cracks of an injured brain that’s “anosognosic” (I think that’s how you’d describe it). It’s a pretty common, but not very well-understood condition that some people are studying and have written about. One of the folks I’m a real fan of is George Prigatano, M.D., who (I believe) works out of the Barrow Neurological Institute in Arizona. He’s written a fair amount about anosognosia, and I really like his style. He also seems like a decent fellow — from his photo and his writing style. (Then again, as with most things, I could be wrong — my brain could be playing tricks on me)

So, when your own disability is hidden even from you, it can make things really interesting… frustrating… confounding… infuriating… confusing… amusing… hazardous… adventurous… you name it. With brain injuries, everybody in the mix can be at a loss about what’s going on with you, and how best to handle things.

I’m thinking in particular about many conversations I’ve had with people over the course of my life that went very badly due to my penchant for confabulation. Confabulation is when you get the details of a story wrong, when you think you’re getting it right. You think you’re being 100% accurate, but you’re actually missing important details, getting them turned around, or whatever. I would be talking to someone and I would get the facts and figures turned around — like times I was at a place… or things I did… or people I saw… or the progression of events. I would get so turned around, without even knowing it, and by the end of the conversation, I sounded like I was either a pathological liar, a fabulist, or I was trying to impress them with bogus information.

All I wanted to do, was relate an interesting story or tidbit, and I ended up looking like an idiot.

Now, until about a year ago, I had no clue that the head traumas I’ve experienced over the course of my life had affected me the way they had. I didn’t realize A) that I had issues, and B) why that could be. I figured I just wasn’t trying hard enough to think things through, and I really beat myself up over this stuff a lot. No one else realized that I sustained multiple tbi’s, either — it wasn’t something I talked about, and it wasn’t something I thought was worth mentioning. And no one around me seemed to realize that my confabulation issues were possibly neurological, and not character-flaw-based.

So everyone in the mix — myself and others — went around with the belief that I had trouble telling the truth at times. And that’s a hard thing to bear. Especially when you don’t mean to mis-speak.

Yes, the doubly-hidden disability of brain injury can complicate things in so many logistical ways, when it comes to interacting with a world that cannot see the problems you’re having… and you yourself cannot tell what the problem is (if you can even tell there is a problem).

In my case, my problems are often not obvious to everyone around me. I they “seem fine” but I’m not processing information as fast as everyone around me. I tend to think visually, using pictures and “little movies” of past experiences to understand what’s going on around me. And that visual processing — while it’s more in-depth and full-spectrum than purely verbal thinking for me — takes longer than just thinking in worlds. Or I might be having trouble with sensory processing — when I’m not able to tolerate the lights/sounds/smells or other stimuli that everyone else is fine with, and I can experience a lot of distress that others cannot relate to because they just don’t have that experience. If you have light sensitivity or you’ve got high tactile defensiveness, you know what I’m talking about. If you seize when you hear certain sounds or smell certain things, you now what I’m talking about. But most of the neurotypical world, which isn’t subject to such disruptive experiences, may not be able to fully grasp what it’s like, which makes it hard to figure out how to relate to someone like me.

But how does it look?

I’ve been thinking hard about how to express the dynamics that take place between a person with hidden disabilities interacts with the ‘normal’ world. A picture’s worth lots and lots of words, so I’ll try to illustrate. Using my own experience as a guideline, here’s how I conceptualize my own situation:
invisible me - I'm on my own

I’ve got all these different internal parts of me that are unique to me and that take up space in me. They aren’t ALL there is to me, but they are significant parts. Things like mood volatility (lability). Things like slowed mental processing speed. Things like non-verbal social communication preference and difficulty decoding auditory input. Things like not being able to take a lot of noise and light. Things like needing to rest more than most people I know. They’re not bad things, per se. They just are. But they do make up a substantial part of me.

Now…

Enter the world…

invisible me - the rest of the world shows up

People around me have a different “color” to them, a different “shape” to their lives. They seem different to me, and while I recognize them and relate to them as other forms in the world, they are definitely different than me. Of course, everyone outside of me, being “shaded” they way they are, with their own “hues” of perception, have plenty in common with others, but they don’t always realize that I’m not like them.

And so they tend to encroach on me…

invisible me - the rest of the world encroaches on me

I don’t think they necessarily mean to encroach on me and impose their own specific sensibilities on me, but that’s what they do. I think that’s what most regular people do with everyone they meet. People need to feel included. They need to feel like they’re part of something. They need to feel a connection with others. There’s nothing wrong with that — it’s one of the things that makes us human, and it’s good. But a lot of times, in their intention to include others in their circles, they jump to conclusions about how other people are — how they should be — how they can be. How I should/can be.

They make a lot of assumptions about who I am and what matters to me, and what I want to do with my time and my attention. They tend to impose their views on me, thinking that I’m just like everyone else. What they don’t see, is that the shapes that make up my inner life are not shaded like theirs with the same hues. I am a “different color” than them, but because I don’t have the same hue as they, my own personal “flavor” of personality is invisible. And they don’t realize I’m not like them at all.

But I do.

And sometimes I need to “take my space” and carve out a piece of the world that is mine, all mine.

invisible me - I carve out my space and say what isn't me

I am often so busy trying to decode the sensations and stimuli and hidden clues of the world around me, that things like politics and economics and gossip and star-studded newscasts are either too much for me to take, or they’re so extraneous and irrelevant to my daily functioning, that they’re an annoyance at best and a draining distraction at worst.

I just have to block it all out, to remember who I am, and keep on top of my processing and functional difficulties… to just maintain a daily way of life without becoming completely exhausted and depleted, and then screw up my life all over again.

So, sometimes, I have to just come right out and tell people, “I don’t understand a word you’re saying.”

Or… “I would like to join you for drinks after work, but I’m exhausted. Yes, I know it’s only Thursday, but I’m really beat.”

Or… “I know you’re really excited about seeing that movie on opening night, but I can’t take being in a crowd of people waiting in line for tickets… and then being in a closed dark space with lots of different smells and sounds for hours on end.”

Or… “I have absolutely no interest in what you’re discussing. I really don’t care about American Idol, I really don’t care who gets voted off the island, I really don’t care about someone’s clothes, I really don’t care about their hair. I don’t care who is best-dressed and who is worst-dressed.”

Of course, this doesn’t always sit well with the rest of the world.

Sometimes people react with surprise. Sometimes they react with offense. Sometimes they’re amused and have to admit they secretly agree with me. But whatever their reaction, I can tell that it sets me apart from them.

invisible me - the rest of the world gets pissed off at me

Regular people who aren’t dealing with disability, I’ve found, sometimes really dislike being told that their pet peeves and attachments are not essential to me.

They may feel invalidated, and they don’t like being invalidated.

They don’t like being excluded from the world of others — from my world. They want to interact with me, but I just can’t…

They don’t like feeling dismissed, and sometimes when I brush them off they seem to feel that way. They don’t realize that I just don’t have the bandwidth to be interacting with them the way they need me to.

And some especially insecure folks really dislike having it brought to their attention that they are not necessarily in the right all the time, and some people have other things to think about, than all the stuff we’re fed on a regular basis through the news and media.

So, people tend to get mad at me. They get upset that I’m not validating their fears and insecurities. They get upset that I’m not participating in their conversations. They get tweaked that I’ve got other things to think about than American Idol and Survivor and the Atkins Diet. They can’t see why I don’t compliment their car or their clothes or their job title.

It’s not that I don’t want to — well, sometimes I don’t — it’s that I am trying to keep myself stable in a world that constantly bombards me with all sorts of stimuli that I have a really hard time managing. People look at me and think, “They’re so together… they’re so mellow and calm and intelligent and thoughtful… ” And they interact with me as though I had everything together, because they cannot see the frayed wiring in my brain, they cannot detect the subtle clues that I’m having trouble with my sensory input, they cannot see the intense pain that simple contact with my clothing causes me. They cannot see the pain in my head that never, ever goes away.

They have no way of knowing what difficulties I’m having, and if they did, it would probably freak them out. If people knew half of what my daily experience is like, I suspect they would weep. I’ve done my share of weeping, but it’s not the most productive use of my time. I have a life to live.

And so I capitulate.

For the sake of navigating the seas of social interaction, I pretend to care about the details of their lives. I pretend to care about their hobbies, their travels, their children, their houses, their pets. I pretend to care about the stock market. I pretend to care about the election. I feign interest in their lives. I mirror their statement with carefully re-phrased repetitions of what they say to me.

invisible me - what happens when I cave to the pressure

It’s actually quite easy to do — all you have to do, when someone says something to you, is repeat it back to them in a different words, with a “punch” of positive emotion that validates them and makes them think you’re on the same wavelength as them.

Case in point:

Guy on the street says, “Hey – did you see the game the other night?”

I say, “No, but I heard about it.” (which is true, because he just mentioned it)

Guy on the street says, “The team is doing great this year!”

I say, “You bet! They’re kickin’ ass!”

Guy on the street says, “We’re going all the way! Can you feel it?!”

I say, “Go Pats!!/Go Lions!!/Go Bears!!” or “Go ________ (whatever team) is local!!!” and I give it a real punch, to make him think I’m totally on board.

Guy on the street goes his own way, feeling like he’s just had a personal exchange with another fan, and I go my own way, having had a successful interaction with someone who needed to connect with someone.

I don’t do it to deceive people. I do it to let them feel like they’re participating in my life. In some cases — especially if the interaction feels a little edgy or dangerous — I do it to assuage them, to pacify them, to make them think I agree with them, when to disagree might result in an argument — an argument that I cannot and will not win, and which may get me in trouble.

It’s not 100% socially accurate, but it works. They’re happy, I’m off the hook.

But in a more in-depth relationship, in my closer friendships and intimate connections, following this strategy compromises the parts of me that are true to me. It’s one thing, to have a casual conversation with people on the street whom I’ll never see again. But in my real life, in my deeper life, in my genuine life, this strategy just works against me, and I lose out.

When I “act the part” that other people expect of me, the parts of me that need special attention, the parts of me that are different and unusual and full of nuance, can get blurred and full of noise. And the parts of others that I try to emulate, as I’m pretending they’re part of me, are just blurred and full of noise

Ultimately, in the end, who is truly served by my attempts at simulating normalcy? In the outside world, it may serve to keep me safe and buffered from the dangers that come from being radically different and deeply defenseless. But in my real life, the up-close-and-personal sides of me, all that is achieved is that the folks around me who cannot — will not — recognize my differences, are placated and appeased and made to feel a little less uncomfortable around me, while I am left at an internal disadvantage in the world.

What I’d really like most is this:

invisible me - what I would like most

That is, for people to recognize there are radical differences within me that prevent me from being just like everyone else… and for people to realize that every “normal” person has within them some aspects that are similar to me, that make them different from the norm. My differences do not make me a threat to others. My different information processing speeds and methodologies pose no danger to others — if anything, they actually help. And my sensory issues, while they are at times problematic and can exclude me from living a full life, heighten my abilities to detect certain details that just fly by others. My on-again-off-again coordination issues may disqualify me from professional sports, and they may cause me to knock lots of things off counters and break things I just try to pick up, but there are also lessons to be learned from slowing down and not flying around at a break-neck pace.

Ultimately, in addition to my accommodating the rest of the world by adapting myself (however superficially) to it, I would also like the “permission” and ability to carve out a space for myself in the world that is truly genuine and authentic to who and what I really am — a mild traumatic brain injury survivor whose experience is atypical and whose abilities vary from the norm. I want the right to express myself and my talents and my abilities in a way that is true to me and my essential nature. And I’d like others to find within themselves the parts of them that are not “normal” — and come to accept and integrate them as a regular part of human experience.

We all have differences, we are all varied creatures on this good earth. We all have our secrets and our hidden abilities and disabilities. My deepest hope is that we may someday create a world where all of us are able to participate in ways that make the most of our abilities and shield us from the pressures to compromise our safety and overstep our common-sense boundaries, in order to appease others or fit in with a world that cannot accept our warts along with our beauty marks.

I want a world without narrow-minded judgment… a world that has the good sense to find the best in each of us and bring that out, while forgiving us for our limitations. I want a world that cares more about its own survival, than keeping up appearances. I want something real. And I want something dignified. For all of us.

Call me crazy, but I don’t think it’s too much to ask.

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How I figured out something was REALLY wrong

Yes, I picture’s worth a thousand words… Here’s a graph of what happened to my financial situation, after my fall down the stairs (I hit the back of my head on the top 3-4 stairs) in 2004:

The interesting thing about this is that I never fully realized that there was something really really wrong with me, till I looked at my finances in 2007. Prior to that, I had thought that the problems I was having with my moods, my temper, my attention, my sleeping patterns, my pain… welll, everything… were due to things outside myself.

I literally thought that it was other people who had the problem. Or, it was just job stress. Or it was an unhappy childhood. Or I didn’t realize there was something wrong at all.

But then, in 2007, I looked at my finances and I realized that something was very, very wrong. I, who had been in the financial services industry for a decade or so, who was studying to become a financial advisor, who had been all about money for years and years and years… who knew about all sorts of common sense investment and savings vehicles… I had literally forgotten to keep track of my finances. And I had forgotten to stash a large lump sum I’d received in a secure interest-bearing savings account.

People, that’s just common sense. It’s the bare minimum you do with a lump sum of money, let alone all the other things you can do with it.

But I hadn’t. Even knowing what I knew, even having the positive orientation that I had to money, even having all this domain experience in savings and investments… something had broken down. And it forced me to take a long, hard look at all the other factors that had been plaguing me in my life.

Suddenly, a pattern emerged. And I started to remember things i hadn’t thought about in years…

TBI Issues Tracking – How I Keep It All Together

For the past year, I’ve been working regularly at figuring out how to effectively identify and manage my TBI-related issues, both from the past and the present. I was keeping a journal on a regular basis, which was helpful, but there was something missing. I needed another tool to help me keep track of what was going on with me — in an objective and fairly brief way.

In my search for information, I paid a visit to http://www.headinjury.com and found their Journal of Daily Experiences. It was just what I needed! I printed out a copy and started using it, tracking my daily experiences and realizing that there was actually more going on with me than I had believed. Only when I really asked myself honestly if there were certain things going on with me — like irritability and anxiety — was I able to identify and address issues that had dogged me for decades, but I’d never been able to either identify or cope with in a constructive fashion.

I used the form from the website, but I eventually found it was too long for me to make sense of, and it was hard for me to get my head around finding each issue that was giving me problems. I needed something more organized — and something that gave me more space to write in. I had a lot to write, and I was having trouble fitting my words into the space there.

So, I copied and pasted the table on the web page into a word processing document, reorganized it with categories, and I changed the wording a little bit. Since it was in electronic format, I had plenty of room to type in my information. I didn’t run out of room.

I also wanted a version that I could print out and write on. Writing by hand is an important part of my regular recovery (it forces your brain to work the hand-eye coordination parts, as I understand it), and while typing into the word document was easier, sometimes I really needed to write the stuff down. Sometimes I needed to record things without a computer.

So, I created a PDF version — with a nice picture of a head with a brain on it, so I could keep track of my headaches, which are pretty much constant.

I have used my form(s) to record information both about my childhood (to see what problems I had) as well as recording information about my daily life. Both approaches help me a great deal in understanding my situation and formulating approaches. And I have written records of what works (and doesn’t work) for me in my daily life. Tracking my childhood experiences really helped me deal with the emotional baggage of what was a very challenging upbringing, and it helped me put a lot of my “badness” in a context I could understand objectively, without constantly blaming myself for my temper, my outbursts, my perpetual flipping out and beating up on my little brother. There was more going on with me and my head, than anyone knew. And I’ve paid a huge price, my entire life, thinking that my very nature was “bad” or “sinful” or “flawed” or “lazy” or “evil” … when so much of my behavior and performance problems read like classic TBI after-effects… and can be directly traced to them.

I wasn’t a bad seed.

I was injured.

And I never go the help I needed.

That doesn’t change the harm I’ve done over the course of my 43 years, but it does allow me to identify some of the true cause(s) of my problematic behavior and either take steps to make amends, explain myself to the ones I’ve hurt, take steps to make sure I don’t do those childhood things in my adulthood, and/or better understand what was really my fault, and what was TBI-related.

I also currently use the form(s) for day-to-day self-assessment. It may sound simplistic, but just recording my experiences on a regular basis has made a huge difference in managing my symptoms and issues. If I don’t self-assess at least once a week, I actually start to feel like I’m losing my mind… I feel like there’s something wrong with me. I feel defective. I feel useless. I feel like a total friggin’ loser. I don’t always fill out every single piece of the form, but I at least hit the high points, and that helps.

When I look at my issues in light of the tbi’s I’ve sustained, and I see that these symptoms are originating from an injury — not a character defect — it takes a lot of the pressure off. Self-assessing and tracking my issues reminds me that it’s not me that’s compromised (tho’ I must admit I have plenty of flaws that have nothing to do with tbi πŸ˜‰ — it’s my injured brain that’s the root of a lot of my issues. And since I know the source of the problems, I can get outside myself and take steps to address the issues I come across.

And that makes all the difference.

I’ve uploaded the two files below for your use. I hope they help you as much as they help me!

Daily Experiences Journal (Wide) – Word Document

Daily Experiences Journal – PDF for printing and filling in by hand

Basic Facts about Traumatic Brain Injury – Video from www.brainandspinalcord.org

I came across this today and really enjoyed it. It’s short, concise, and to the point.

http://www.brainandspinalcord.org/media-center/FactsAboutTBI.html

I tried embedding the video in this blog, but the code the site generated wouldn’t “take”. So, pay a visit to the site yourself and take a look. There are other videos too that I found helpful.

My second neuro visit OR If only they could walk in my shoes…

Here are details from my most recent neuro visit, I believe back in August. As you can see, it was a less than stellar experience, and I’m still recovering a bit from it. It’s hard to believe that someone who specializes in neurological disorders can be so callous, but here we have it…

I had a 9:30 appointment scheduled with Dr. X to discuss headaches I’ve been having. I had been to see another neurologist about my series of mTBI’s some time back, but the results had not been conclusive, and I felt I’d just been shoved off. I didn’t mention this past visit to this new neuro — In retrospect, that was probably a tactical error, but I wasn’t sure how to explain what had happened, so I decided it was better to say nothing. When in doubt, I tend to do/say nothing, rather than initiating and seeing things blow up in my face. Plus, I wanted to start with a clean slate and get this doctor’s opinion without input from anyone else.

I had been to see this neuro on other occasions with a friend of mine who has some issues of their own. I thought it would be a good idea to work with someone who already knew me in a different capacity. I thought it would be easier for me to work with someone with whom I was already familiar. So, I had high hopes for this meeting. Hopes that didn’t pan out.

Here’s what I recall happening:

I arrived early at 9:20 and finished filling out my paperwork.

The receptionist was unpacking boxes at the time. I settled up with her for the co-pay and gave her my license and insurance card. I thought that the co-pay was $15, and when she corrected me that it was $25, I felt as though she thought I was trying to “get one over on them” and get out of paying the $10. I felt as though she was treating me like I was hostile. It was an innocent mistake on my part, and not intentional.

Around 9:30, the receptionistΒ  had me go in to Dr. X’s office. I wasn’t sure about which door to go in, and she said “You know which one it is.” I honestly didn’t. I couldn’t remember which one was his, but when she pointed me to the door, I walked in and took a seat.

Dr. X greeted me cordially, shook my hand, and we chatted a little while.

He asked me why I was there, and I said I’d been having constant headaches.

He looked over my papers and told me that I had forgotten to fill in my employer and my occupation. He seemed miffed that I’d forgotten. It wasn’t intentional on my part. I gave him the information then, and he filled it in. We chatted a little about my work.

He asked me how old I was, and I hesitated when I answered. I don’t tend to think of myself as any certain age, and I will usually have to calculate how old I am, based in the year it is, less 1965, and then figuring out where in the calendar year I am. Dr. X commented that it took me a while to answer, as though there were something wrong with that, and I told him I usually have to do math to figure that out.

He then started to look over my information sheet, which I’d taken great pains to complete as thoroughly as possible. He flipped through the pages, and then started to work his way down through.

I pulled out my notebook with my family medical history, my history of injuries, my symptoms, and other information I’d collected which I thought might be important to know. I also had many pages of a headache journal I’d been keeping for a number of months, which showed exactly where and with what intensity I’d been having headaches. I had compiled this information over a period of more than 6 months, and it contained my most complete understanding of my cognitive situation. I also brought the notes with me to consult, so I could be accurate in my accounts. I tend to get turned around and unintentionally confabulate when I try to recount things (more when I’m under stress, but even under regular conditions, I have had a lifelong issue with unintentional confabulation), and I had hoped that I could rely on my notes to help me be as accurate as possible.

Dr. X told me to put away the notes. He didn’t want to see them. He also didn’t allow me to refer to them.

He proceeded to ask me questions about my headaches, the intensity, the frequency, the nature, the duration, and when I took a while to answer him, he became very impatient and told me I was over-thinking things.

He told me not to over-think my answers, but just to answer off the top of my head, which is very difficult for me to do.

I had to pause a lot to think, and my answers were not instantaneous. I could not verbalize my answers as quickly as he wanted me to, apparently, because he kept telling me to just answer with averages.

It’s very difficult for me to answer that simply, because nothing is that simple to me. I do not think in terms of a “bottom line” and I have a very precise and logical thinking process that sometimes takes longer than “normal” to complete. Being accurate and truthful is very important to me, and when I cannot be accurate, I become anxious. He really pressed me for quicker answers. “Just off the top of your head,” he said. “Just on average.”

It felt as though he were intentionally trying to trip me up and make me contradict myself, or find some “hole” in my “alibi”. I felt like I was being grilled, and I had done something wrong.

I had to stop and think a lot — I could see the answers to his questoins right in front of me — when he asked me about timeframes and durations of my headaches, I saaw images of calendars with days marked, and the severity of my headaches marked on the calendar (some were in colors). I could also see the pages of the calendars flipping by, and I tried to see what information was where. It was very hard for me, though, because he was moving faster than I could go, and I kept losing my place with the images. I had to close my eyes a lot to think, and I had to look down at the ground. I couldn’t look him in the eye AND figure things out, because looking at him distracted me from my thinking — and I started trying to “clue in” to him, instead of the answers to my questions.

At one point, he appeared to be very frustrated and said I needed to speed things up, or “We would be here till next Tuesday” before we got all the answers to the questions. I agreed with him, but I told him that I had to translate my visuals into words, and I am not a primarily verbal person. I tried to explain that I see the answers as images, and then I need to translate them into words, but I’m not sure it sank in with him. I was getting very frustrated, and I was tearing up, which seemed to annoy him.

He also asked me about any addiction background, and I told him I had quit drinking in 1989. It had been 19 years since my last drink, and I had not touched a single drop since. He asked if I’d taken drugs, and I told him a little bit — speed in high school, but only a few times a week, as it made me too speedy and upset my stomach. I told him had smoked marijuana while I was drinking during high school and college.

I may have left the addiction piece of information off my form, but it was not intentional. It was an oversight. He didn’t seem to see it that way.

He asked about any medication I was on, and I told him that I didn’t take any, and I was not a big medication person. I told him that I took Advil, now and then, and I had once taken it for headaches, but it had since stopped working at all.

We talked about my head injury experiences, and I gave him details from what I knew and could remember. It was very difficult for me to think on my feet, and I was becoming increasingly anxious. He was moving very fast, so I’m not sure I answered everything completely. I had my notes, but he would not allow me to consult them. When I tried to pull them out, he told me to put them away.

Dr. X seemed to become increasingly impatient with me, and he said we were just going to focus on my headaches.

He asked about the nature of them, if anything helped, if I exercised regularly, if I was under stress.

I told him that I’ve had a lot of stress, and that my headaches have gotten worse over the past 6 months. He asked if I’d been under more stress, and I told him I’d been in a very stressful job for 3 months.

He said he’s not a big “pill person”, and I said I was not, either. I prefer to deal with my aches and pains in other ways, and sometimes I’d rather just live with pain, instead of taking medications that gave me side effects.

He asked about the vertigo, and I told him it was worse when I had allergies. I told him that it was very intense and I had to hold onto things to keep from falling over at times.

He asked about my history with other injuries or conditions, and I told him about a diagnosis of lupus diagnosis in the late 1980’s, early 1990’s. He asked if it was discoid or systemic, and I believed it was systemic, but when I told him about the skin rash, he said that sounded like discoid, not systemic, and I became confused and said it may have been discoid, but not tests were ever conclusive. Also, the medications I’d been on had not helped.

After a while, we went into the examination room, and he conducted a physical neurological exam. It was standard, and he seemed to go very quickly — more quickly than I’d seen him go with a friend of mine. He seemed to be in a rush, and it was painful when he checked the reflexes on the bottoms of my feet. It was hard for me to answer quickly, when he pricked me with the pin, and sometimes it took a little while for me to verbalize I’d had the sensation. He seemed to think that I was “fixing” my answer to fit what he wanted to hear. I was getting confused and felt like the room was pulling away from me, and my reaction time was slowing.

During the exam, he asked me again if I had taken drugs recently. I told him no, I had not taken any drugs since stopping drinking in 1989. I believe he repeated the question, and I answered him again in the negative. I couldn’t figure out why he was asking me if I’d taken any drugs. It didn’t seem like the kind of thing he’d be asking me while he was checking my reflexes.

He told me that my exam was normal, and everything looked good.

We went back into his office, and he said that my exam looks clear – no indication of a tumor or vascular issues. He said he believed my headaches are tension headaches and he wrote some notes on a piece of paper. He gave it to me, and he said that my headaches are probably muscular in nature, related to stress. He also said that he thinks the vertigo is probably BPPV (Benign Paroxysmal Positional Vertigo) or Meniere’s Syndrome, and I could check with an Ear-Nose-Throat (ENT) specialist if I chose to. He didn’t seem to think I needed to see someone, but my ears have been hurting me a lot, and I said I would like to talk to an ENT specialist. He referred me to a doctor he knew and believed was good. He wrote that down on a piece of paper (his prescription pad?), as well, and gave me that.

He said that he didn’t think that medication would necessarily help, as it may cause side effects, and I agreed with him. He also said he didn’t think an MRI or EEG would show anything, which was really disappointing. I mean, I have a whole lot of issues, and I have trouble sorting them out, and the one way I can think of reducing some of the mystery, is to have an MRI or an EEG or something like that. I really didn’t know what to say at that point. All I could manage, was to agree with him, which irritated me when I did it, but I was helpless to do anything else. My thinking process had slowed considerably by that time, and I was feeling very overwhelmed and confused by everything. I wasn’t sure if he was being congenial or if he was upset with me. He seemed distant. But I couldn’t really tell for sure how he was being with me.

He asked if I exercise, and I didn’t know what to say. I lead a pretty active life, and I move a lot through the course of each day. I could see myself walking and moving a lot at work, walking across parking lots, and making extra effort to incorporate exercise into my daily life, but I couldn’t just come up with a simple “yes” or “no”. I had to think about whether or not I was going for walks. I eventually answered “Not regularly,” and he said, “No” and wrote that down. He said he wanted to see me exercising on a regular basis, nothing really heavy, just maybe going for a brisk walk with a friend several times a week. I saw a friend of mine and me walking along a road near my home, but I didn’t know when that would or could happen, as I work such long hours during the week. Dr. X appeared a little exasperated with me, as though he thought I wasn’t being fully cooperative.

He asked me if there was anything I do that relaxes me, but I was having a hard time processing at that point. I couldn’t think of anything — I was drawing a blank. I told him I draw and I write, and he recommended I draw 15 minutes a day. I couldn’t figure out how to explain that when I draw, I get very absorbed in my work, and I lose track of time, but there was no time for me to figure out how to say that. He also recommended that I exercise regularly, go for a brisk walk with a friend on a regular basis. Again, there was no time for me to respond in a way I felt was adequate.

I told him I was going to see another doctor for a neuropsychological exam, and he said he would like to know the results of that. I told him I would keep him apprised.

He said he wanted to see me again in 7 weeks, to see how I was doing.

I made an appointment with his receptionist. I had a hard time thinking through my schedule at the end of August, beginning of September, and she was not very patient with me. She acted like I was pretending to be “slow”.

Basically, I felt completely humiliated and treated like I was a liar who was seeing him under false pretenses — as though I had been an addict showing drug-seeking behavior. I left in a daze, and I went to the nearest bathroom, locked the door tightly, crouched down in a fetal position, and cried… and cried again in the car before I drove to run an errand. And felt like crap for the rest of the day. I did collect myself and manage to get on with my day, but the flow of my day was completely disrupted, as was my weekend. It was too disruptive for words, and I in retrospect, I really resent the implications that I think were in play.

Sometimes, it just sucks when nobody can tell you’ve got issues… and they treat you like a criminal, just because you’re trying to get some answers (and they apparently can’t help you, but don’t want to say so).

It also sucks to have processing difficulties that might be making things look worse — or better — than they are, and that keep you from being able to ask for help.

Headaches? Really…?

Okay, this is weird. I just realized I usually have a headache. And I have, for many years. I can’t remember ( πŸ˜‰ if this used to be the case when I was a kid, or if it’s relatively recent, given my 2004 (re)injury.

I’ve been going through the different symptoms and after-effects of TBI listed on various websites, thinking about whether I’ve got any of them. And I do. Headaches are listed, but for some reason I never thought that I had a lot of headaches. Just to make sure, I did a quick check to see if I had one. Sure enough, I do. I have them just about every day.

I’ve been tracking my headaches for the past couple of weeks, and if I don’t start the day with one, I often end up with one by mid-morning or early afternoon. They can start in the back of my head, then move around to the left or right side… or start at the crown of my head, and then move down to the back. There could be more going on there… I need to check with my doctor about this.

Now, you may be thinking (and part of me agrees) that concentrating on headaches can bring them on. Certainly, tension can play a part. But the sharp stabbing pains that shoot through my skull now and then, are not something I can (or do) make up. And I have noticed them for many years. Tension only explains so much.

There could be other issues, I suppose. Serious health concerns that scare the living daylights out of most folks. But it’s good to check this out and see what’s really going on.

Then I can actually do something about it.

Interestingly, this brings up more issues of self-assessment with me. How could I have headaches on such a regular basis and be so clueless? Certainly, my pain threshold is higher than most folks’ I know — I credit years of strenuous activity and rigorous athletic training for that ability (tho’ perhaps it has more to do with my TBI than training). And I’m pretty good at blocking out things that don’t serve me.

But ignoring headaches for three decades? Or has it just been three years? That’s a bit eerie. I had come across a book over at Google Books called Women With Visible and Invisible Disabilities that talks about how some female TBI survivors don’t identify the pain they’re in… I’m wondering if that’s true for male TBI survivors, as well — if it’s particular to head trauma, that people lose the ability to tell if they’re in pain and if so, how much pain they’re in.

It’s oddly difficult for me to self-assess my own pain level. I just can’t tell, from one day to the next, how uncomfortable I am. And I’ve learned not to pay attention. I had some issues with chronic pain, about 15 years ago, and I guess I got in the habit of just not paying attention to it. Also, I’ve been physically active all my life, so I’ve usually been in some sort of discomfort from sore or pulled muscles, and if I focus too much on the sensation, it just drives me crazy. Frankly, some days the pain I feel in my body is so complete and consuming, I have to block it out, to function properly. Analgesics don’t help. Even prescription drugs don’t do the trick. So, I just think about other things.

Still, it’s unsettling to think that I’ve had headaches, all these years, and never realized it. Just as it’s unsettling to think that I’ve been cognitively impaired since I was 7 or 8 years old, and I never realized it — nor did anyone around me.

I’ve been plagued by this nagging sense of deep-seated uncertainty, ever since coming to terms with the idea of living with a TBI — and not knowing it all these years. The very idea that something so profound can be going on with me, and I never realized it, has been deeply unsettling and has caused me to question just about everything I have assumed about myself and my life. It’s caused all sorts of insecurity in me and the people close to me who are coming to terms with my situation, as well… probably thinking (too), “How could this have been the case, all these years, and we never guessed?”

I’ve also been hounded by a pervasive sense of betrayal, that my parents never got me the help I needed. True, 35 years ago, there wasn’t a whole lot people knew about the brain, and my parents didn’t have a lot of money when I was growing up, to pay for specialists and tutors and the like. But the fact that people just never acknowledged or addressed my TBI… and I was never afforded the opportunity to face it and come to terms with it and adapt accordingly… well, it’s a little much to take, right now.

But it’s a new year and a new start. I can’t sit around feeling bad about water that’s long since flowed under the bridge. I can find my own answers and devise my own course of treatment. Figuring out that I actually do have headaches is a step in the right direction.

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