Watching within

“You’re feeling sleepy…” No, I’m NOT!

So, this year is off to a roaring start. I’ve already had a few situations of hurting people’s feelings — that escalated from people being super-sensitive to something I said, or how I behaved.

I will admit, I have come on very strong at times, and I have had a little “scorched earth” action, where I felt like I was either being threatened or disrespected.

Yeah, I’m not much for being threatened OR disrespected, and I will react if it seems like that’s happening. I have to watch myself, though, because that can cost me — in damaging existing relationships or nipping new ones in the bud before they get a footing.

The thing is, I need to make sure I don’t over-react, which I can certainly do. Especially if I’m not paying attention to what’s going on inside my head and veins and autonomic nervous system, I can quickly switch into survival mode over some interpretation. In some cases, I need to be in survival mode, but I don’t need to completely scorch the people who I perceive as a threat, like Smaug laying waste to so many Middle Earth towns.

Yeah, gotta watch that. Particularly when I am tired and stretched.

I had a couple of tricky situations this past week, during the conference. Even before I left the airport, I had sent an email to a colleague who is also a good friend, which really hurt their feelings. I was reacting to them running their mouth and getting me in trouble because they don’t know how to be discrete about sharing information with upper management before it’s been fully analyzed. They let a few little factoids slip, and the uber-uber-boss got wind of it and proceeded to tear my boss a new one, over what was really nothing.

Geeze. And this after I’d specifically told this person to NOT share information with the uber-uber-boss. God help us.

Anyway, the email I sent was terse, abrupt, and pretty harsh. The situation called for it — something had to be done to keep them from continuing to run their mouth. But then they got all worked up over it and pitched a little hurt-feelings hissy fit, and then it blew back on me and I had to spend days patching things up. If they’d been able to keep their mouth shut, this never would have happened. But the individual who “over-shared” has impulse control problems. They always have. They get carried away and say and do things that make them extremely difficult to deal with. I don’t doubt for a minute that it’s due to them having sustained a severe brain injury when they were younger — they got thrown from a motorcycle and landed on their face and spent the next week in a coma, then had to learn to do everything — walk, talk, function — over the course of several years.

When they get tired and out of sorts, all the standard TBI stuff comes up — impulsiveness, outbursts, emotionality, aggressiveness, confusion, disorganization… and last week, when I sent that email, they were coming out of an extremely long week that was a prime recipe for TBI meltdown — for both of us.

Because I was tired, too. And under pressure. And I wasn’t minding my P’s and Q’s, and I let things get out of hand. I wasn’t the bigger person, and I took matters into my own hands, and the result was not pretty. It’s human, it’s to be expected under the circumstances, but I don’t want to do it again anytime soon.

The second experience I had was at the conference, when I met up with some old friends whom I hadn’t seen for a long time. One of them brought their new love interest with them, because they wanted to introduce them to me and my spouse. After an initial contact at the hotel that was pleasant and friendly, I had to run out and take care of some more things, then I came back, and we spent more time all hanging out together.

That’s when things got dicey. The new Love Interest started telling us about themself, and the more I heard, the less I liked. First of all, they had dredlocks, which is a huge flag for me with white people. Something about white people wearing “dreds” pushes a bunch of buttons with me, partly because every white person with dreds I’ve ever known has come from a privileged background and they live their “alternative” lives scamming off other people. This is only my own limited experience, but every white person with dreds has given me attitude about being part of the “system” and selling out for my full-time job and my house and my regular life.

It makes me insane. Partly because I work in the “system” and have a full-time job and house and regular boring life, because it’s the only way I can function under my circumstances. I need routine. I need predictability. I need a full night’s rest, or I cannot function. At All. This isn’t by choice — it’s by necessity. Certainly, I would love to be able to come and go as I please and be all alternative and what-not and “live my dreams” and “embody my passion” however and whenever I like.

But for me, that’s a recipe for disaster. My brain is such that if I don’t have regular routine and predictability and a whole lot of really boring stuff giving structure to my life, I lose it. It’s not pretty. I become extremely difficult to live with — as the Love Interest found out.

So, there I am, hanging out with people I really love and care about, and here’s this dredlocked person making snarky comments about “white people”. As though they’re not white. And they start talking about their past, moving around here and there. Back and forth all over the world. USA – China – South America – Europe – Asia – back to the US – all over. I guess I got a bit jealous, because that’s the kind of life I would rather be living, but circumstances demanded different choices from me. It’s a little rough to move around the world all the time, when your spouse is disabled and ill, they depend on you to survive, and you can’t keep a thought in your memory for longer than 15 minutes.

According to my spouse, I got pretty aggressive with this Love Interest, firing off questions about where they lived and when. Thinking back, it was definitely an Alpha-situation, with me standing over them, like some interrogator, bombarding them with questions. At the time, I was so caught up in learning more – I actually wanted to hear more about what they did, and when. At the time, I didn’t intend to be aggressive. At least, I don’t think so. I was actually really interested in hearing what they had to say. I wanted to hear more.

But it wasn’t perceive that way, and apparently I made everyone in the room very uncomfortable. I was clueless that people were uncomfortable. I was just focused on hearing more, because my life has been so incredibly uniform and established for the past 20 years.

At the same time, though, there were some alarms that were going off in my head — so maybe I was being aggressive.

The first alarm was the dreds. The second alarm was the Love Interest trying to sell my spouse on their services doing “neurolinguistic programming” — a/k/a hypnosis — to solve some of their mobility issues. My spouse has some serious and long-standing mobility problems due to back and leg pain, and many people have told them it’s because of some emotional block or unresolved issues. Personally, I think it has more to do with them just not moving enough and not strengthening the right muscles to support their frame. They also need to lose about 30 pounds. Most healthcare professionals we talk to, feel exactly the same way. But lo and behold, here’s yet another “alternative healthcare practictioner” trying to sell my spouse on mind control techniques to solve their physical problems.

Of course, it couldn’t be done in just one session. But after an “intake interview” they could continue to work over the phone at any distance. The rate was $100/hour.  No insurance coverage available.

So, yeah, here’s this individual who’s living on the margins, pretending to be something they are not, just flitting around doing as they please, subtly slamming people like me, and they’re trying to hard-sell my spouse into signing up for hypnosis, which of course I will be paying for out-of-pocket, if it ever happens. On top of it, they’re talking to my spouse about working together to create some sort of alternative event, and I’m getting a sickly deja-vu in the pit of my stomach about all the other marginal folks my spouse has tried to work with who started out seeming so alternative and progressive, and just turned out to be nutso, flighty, opportunistic users who thought they could take advantage of the “rich” people with the salaried job, the house, and the two cars in the garage.

Come to think, of it, I’m surprised I was as polite as I was, that night. If I had really been aware of how I was feeling at that time, I probably would have 86’ed them, or called it an early night.

But like I said, I was pretty clueless about just how threatened and aggravated and antagonistic I was feeling. I was in the “zone” — or so I thought. And my memories of the evening were totally different from how my spouse describe them to me later.

Anyway, the rest of that evening went slowly downhill. I was actually feeling pretty strong, that night, and I had a good time catching up with my old friends. But the Love Interest became increasingly withdrawn as the evening went on. They wouldn’t make eye contact with me, and when we rode back to the hotel, they made sure to sit far away from me. It was weird. I mean, I tried to reach out and talk to them, but they kept their distance. Maybe because I was a representative of “THE MAN”, and/or I wasn’t playing along with their alternative role-playing game.

In the end, they barely said good night to me, and they were obviously glad to get away.

I feel badly about the situation — mostly for my friends, who were obviously fond of the Love Interest. To them, they were wonderful, from what I could tell, and it seemed like they did really care about each other. But my shields went way up – to 110% – with this person around, and I was NOT going to have my spouse snookered into yet another boondoggle that was expensive, time-consuming, far from guaranteed, and happening on the other side of the country.

Yah, not gonna happen on my watch.

Looking back, I realize now that my instincts were pretty accurate. I was “tuned in” to what was going on beneath the surfaced, and I took corrective action without going ballistic. I could have gone ballistic, under the circumstances. The warning signs were written all over the situation. But aside from some pointed questions and uneasiness-provoking directness, I didn’t go all Rambo on the Love Interest. I just made it clear that I was not buying what they were selling, I didn’t just agree with every little thing they said. And I didn’t give a shit if I did piss them off.

My friends were certainly uncomfortable, now that I think about it, and they should be. Because here is someone they ostensibly love and trust, who is probably using them for their own selfish purposes. And I hate seeing that happen to anyone I care about. My friend who is dating them has fallen in with questionable people before, and they are extremely susceptible to users like this. I’ve seen it before, and it appears to be happening again. I think it has to do with some sort of guilt from their parents having money and being community leaders, and them wanting to reach out and help the less fortunate.

In my experience, the “less fortunate” can sometimes get that way because they would rather scam others than take responsibility for their lives. And I hate seeing good-hearted people used by those kinds of scammers. So, to stand by and do/say nothing and act like everything is hunky-dory… that’s not an option for me.

This isn’t a game, folks. This is life. I know that my friends come from money, so they will always have someone to help them, should things go sour for them. They can afford to fritter away their days and years without terrible consequence (like for me and my spouse). Their parents keep them well provided for, even well into adulthood. But can we really afford to squander our lives — our precious, precious lives — on people and experiences that constantly take, and do not give?

There is so much that needs to be done in the world, and it makes me absolutely NUTS to see the talented, gifted, intelligent people in my life frittering it all away on people who take advantage of their good hearts. They fritter it away to rebel… for entertainment’s sake… or because they don’t realize just how precious and rare their talents and gifts and intelligence really are.

What a waste.

Unfortunately, I can’t spare my friends from their poor choices in love mates. But at least, in this case, I didn’t allow the User to “attach” themself to my spouse and come home with us. Yes, people got their feelings hurt, and yes, people were really uncomfortable. But I can sleep better at night, knowing that there is no way in hell that predatory parasitic Love Interest is going to come anywhere near my family again.

They tried to work their NLP hypnosis magic on us, and it didn’t work. I saw through it and took corrective action. I wasn’t consciously aware of the details at the time, while it was happening, but I went with my gut and my instinct, and as it turns out, I was — as they say — Right On, Man… Right On!

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Guest Post: Why I Hate The Invisible!

Speed can do some serious damage – and so can attitudes

Another great post from our friend Ken Collins

37 years ago today, I was recovering at my parent’s home in Oakridge, Oregon after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, at 4 a.m., on December 31, 1976. My friends who were there saved my life and said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto.

On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of brain swelling.

My hospital records show that I was in a Posey Jacket and wrist restraints all the time I was in the hospital. One day when I was in the bathroom I yanked out my catheter and a few days later were sent home with my parents because I started to get loose (3 times in 6 days). On my last day in the hospital I was found urinating in a planter in the hallway.

For my own safety and the liability of the hospital, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home, long term rehabilitation facility or state institution – unless they have good insurance, but when that runs out and they become “poor”, many will be forced to have the government pick up the tab. This starts by applying for Social Security Income (SSI).

After people go on SSI, they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution, if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.

This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food, utilities and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?

Oregon was one of the first states in the U.S. to develop Medicaid home and community-based services. This was all after my injury, and if home and community-based services would have been available, I might not have had to steal food and do other things that would have put me in jail or prison if I’d been caught. It’s humiliating to have to steal food to survive.

Humiliation is invisible: that’s why I hate the invisible!

Every night when I would go to bed and close my eyes and try to sleep I would see –
pictures of people, images and objects floating by as I lay there with my eyes closed. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing, all kinds of scenes and images floating by as I tried to sleep. When I would finally get to sleep I wouldn’t dream. In the morning when I awoke it was like I didn’t sleep at all.

These pictures floated by for about five years, and it took another five years before when I closed my eyes – the face of the man with a beard and long hair looking at me on the other side of my eyelids went away.

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

Before my accident I was a professional baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.
The struggle and turmoil caused by brain injury is invisible: that’s why I hate the invisible!

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

To look at me now, 33 years later, you would never guess that I have had such a difficult time. I have faced many of society’s barriers, most of these attitudinal. Attitudes are invisible and are fueled by ignorance and fear to create invisible lines of prejudice and discrimination. Attitudes are invisible and breakdown trust, hope and our own well-being.

Attitudes divide us, separate us and control us: that’s why I hate the invisible!

Handicapped gets its origins from an old European phrase, “cap in hand” when people with disabilities had to beg to survive. Why is it that people with disabilities are forced into begging the Congress and Senate every year not to cut Medicaid, food stamps and other programs they depend on to survive? Politicians say they care and are full of promises to help. What they say and what they do are two different things: that’s why I hate the invisible!

Invalid and invalid are spelled the same, but have different meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear.

Stigmas and stereotypes are invisible: that’s why I hate the invisible!

People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer it – our input is disregarded all in the name of “health and safety”.

Paternalism is invisible: that’s why I hate the invisible!

Away we go, trying to rebuild our shattered lives in a society that does not equip us to deal with the prejudice and discrimination we will face because of our disabilities. When we fall short of our personal expectations we fall victim to a paternalistic system that tries to fix our every move and keep us safe and not allow us to learn from our mistakes just like everyone else.

Last week, when I was job developing with a 48-year-old man who has a brain injury and a long and productive work history, and I ask the manager, if they were hiring. She has worked with our agency before so I consider her to be a lot more educated about employing people with disabilities than most in Gallup.

As I ask her about hiring Robert, she announced to me in a loud voice as she stood by the cash register, that she doesn’t have any opening right now but, “I have worked with people like that before” looking straight at Robert as if he was invisible.

Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we must overcome if we are truly going to become equal members of our community?

Many of my friends use wheelchairs to get around because of accidents, injuries or illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or server will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want.

I guess because they can’t walk that means they can’t hear either?

How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.

When people with brain injuries and advocates try to educate people in our society about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference.

Indifference is invisible: that’s why I hate the invisible!

People with brain injuries want to live just like everyone else. We don’t like to be made fun of or talked down to. Honor, embrace and value our experience and knowledge we have gained.

If you hear someone call someone “Retard” – “Crazy” or other degrading names – speak up and educate them about what they are saying. If you see someone making fun of someone who has a brain injury or retarded – speak up and tell them not to do be so ignorant!

Don’t be afraid to speak up and be heard, because nothing gets done when you say nothing and become invisible!

I’m not necessarily slower – I just have more to think about

Choices, choices…

I’ve been thinking a lot lately about concussion/tbi making you “dumber” – slower, etc. When I had my neuropsychological exam, it became painfully clear that my processing speed was slower than expected. And it really bummed me out for quite some time. Plus, once I was aware that this was happening, it seemed like I couldn’t do anything without being painfully aware that it was taking me a little longer to process things than I (and others) expected it to. For some reason, everybody just expected that I’d be able to respond immediately to their questions or comments or conversation starters. But it just wasn’t happening.

After thinking about this from a bunch of different angles, I had a bit of a revelation this morning. It was something I’ve thought about before (and maybe I’ve written about it before – I can’t remember), but this morning it really made a whole lot of sense:

It’s not that I’m necessarily slower or dumber than I “should” be — or than I used to be. The thing is, after my TBI(s), I became so much more sensitive to a lot of different stimuli, and my brain has to work harder to sort through a larger amount of input, than before. It’s like the injury/-ies put holes in the filters that are usually there, allowing in a whole lot more input and information — sensory, like light and sound and (sometimes) smells and touch/feeling — and all that has to be factored in. It’s like my brain has to work harder to shut those things out, and since concussion/TBI has a way of activating your sympathetic nervous system fight-flight activity, you’re even more alert to all the stimuli around you…. constantly scanning and checking things out and sensing for danger, where it may or may not exist.

I’m sure I’m not the only one who has this.Maybe someone else can confirm/affirm this for me?

Think about it – say you give someone a deck of cards to shuffle and sort. Then you give someone else two decks to shuffle and sort, while they’re having a conversation with someone and an important piece of news is playing on the t.v. behind them. If the two people race to get done with their shuffling and sorting, the person with the two decks of cards are is going to take longer — because they have more to sort through, in the first place. And they have these other distractions going on around them.

That’s what it’s like after concussion/TBI – so of course I’m going to seem “slower” than others — when in fact, my brain is actually working harder, and perhaps even more efficiently than others, because it has so damned much stuff to sort through.

I think this can also explain why folks after TBI have the same IQ level as before, only now their processing speed is slower. I’d like to challenge the idea that processing speed is actually slower, in fact. Because regular measures probably don’t factor in the distractions and added sensitivities that have to be filtered and processed. Heck, if you look at the sum total of all the activity, it could be that post-TBI, your processing speed actually increases — but your brain is so busy trying to sort things out and re-categorize them and figure out what it all means (all over again) and re-learn the old past familiar things… not to mention battle against the rising dismay that things “don’t work like they should” and the wondering “what the hell is wrong with me?!” … that the end result and net effect looks like you’re stupid and slow and not keeping up.

That’s my theory, anyway. Although it’s almost purely anecdotal, it’s consistent with my experience, so I’ll have to go with that.

It’s ironic, isn’t it, that we go through these things that actually make us stronger and more active, but people who don’t understand and don’t share our experience (including researchers and doctors and therapists and other certified experts), will label us as “weaker” and “less active” and “stupid”… all because they just don’t get it, and they can’t see why they should change their opinions.

I’m not sure what it will take to change this, but for the time being I feel pretty good in my own changing understanding, and it’s giving me some relief from that nagging sense of being stupid and slow and (excuse the expression) retarded.

Anyway, it’s a beautiful day, it’s Memorial Day — so, here’s a big THANK YOU to all who have served, and are serving, and to all who have paid the ultimate price out of love and service and duty. I probably wouldn’t be sitting on my back porch watching the dragonflies making their rounds this morning, if you didn’t do what you do. So, again, thank you.

But enough of the talk. It’s time to get into my day and enjoy myself with friends and family. Here’s hoping you can too.

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…  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! 😉

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.