The magic of assisted tbi self-assessment

Okay, this is a very strange thing — I know that self-assessment is generally really difficult for TBI folks, and that we have a hell of a time figuring out what is really going on with us. I’m no exception. I tend to see things as problems AFTER they have become so glaringly problematic that all is (nearly) lost.

The thing is, I seem to have (re)discovered a way to help me around that — it’s my daily issues tracker. Sitting down to take a look at what is going on with me, and then doing an objective assessment of where I’m at, is an extremely good exercise for me. I have sort of adapted the approach of Give Back, who have an active self-assessment focus, and who have good results to show for their approach.

It might sound like this is counter-productive — focusing on my limitations and all. But it’s actually a very good exercise for me. I lose track of what’s going on with me very easily, and I can quickly slip into a state of not paying attention to the important things in my experience, and then I get turned around and confused and quite upset in the process. If I don’t actively track what’s going on with me, the anger and rage and distraction get to be pretty disruptive.

And that’s no good.

So, I’ve been tracking my issues, and it’s actually been helping me a great deal.

For example, from the other day:

I have been very impulsive and distractable. I can’t seem to keep my mind on what I’m doing for more than a few minutes at a time. I’m nervous about work, excited about some of my projects I’ve got going on, I have a lot going on, a lot of balls in the air, and I’m tired, too.

The only thing I can do about this is notice when it happens and manage it. I’m getting better at stopping myself from going all over the place. But I’m still having trouble keeping centered and focused.

Now, just after a few days of being aware of this, I find I am less impulsive and distractable than I was before. I am doing better at keeping my mind on what I’m doing for more than a few minutes at a time. Because I am aware of what is going on with me, I can mange it better, by relaxing to take the pressure off and focus on what is most important to me.

Overall, I’m doing better at stopping myself from going all over the place. But I’m still having a little bit of trouble keeping centered and focused.

So, there it is. I’m aware of my distractability, and I’m taking steps to correct it. I’m not perfect, by any means, but I am aware of the issue(s), so I can actively manage them.

And that makes all the difference. Seriously. When I am not actively self-assessing, things turn into a godawful mess. I let things slide. I let things just slip. And I don’t do right by myself, my relationships, or my work.

When I DO self-assess, using my spreadsheet and list of issues — to show me the issues that I’ve been having, to jog my memory and keep me honest —  I can get a clearer view of how I’m really doing, and get on with my life, without trying to remember/figure out what “might” be going on with me.

And it’s good. I’ve seen some pretty impressive improvements just in the past few days. It doesn’t take much for me to get myself honest — I just have to sit down for a few minutes and really pay attention to what’s going on with me. If I don’t do that, and my issues run away with me, then I end up overwhelmed by things I cannot see or detect, without a clue why I’m so overwhelmed.

And that’s not good.

But I have tools to deal with this situation. I just need to use them. When I do, things have a way of coming together.

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When absolutely positively confident, do… nothing

Warning... warning...

I’ve been thinking a lot, lately, about how tbi has messed up my ability to assess situations. From tests in school to social situations to job situations, I’ve often found myself quite unpleasantly surprised by outcomes that I was sure would turn out in my favor. On tests in school, particularly, my ability to tell whether or not I did well has been sharply curtailed.

I can’t tell you how often I’ve been in a testing situation and thought I did GREAT… only to find out that I performed about average. Sometimes even worse than average. And I ended up feeling like a bigger idiot than I looked like on paper.

What a bummer.

In social situations, I’ve often felt like I was saying something that was either clever or engaging or socially appealing… only to find people looking at me like I had two heads, or backing away (literally or figuratively). This has gotten better in the past years, since I started seeing my neuropsych. There’s something about sitting in a room with someone regularly, knowing they’re not going to laugh at me or make fun of me or ridicule me or ostracize me, that lets me loosen up and just be — and also practice interacting with another person in a meaningful way.

At work, I’ve often thought I hit a home run, only to find that I’ve missed a critical piece of information. That’s a real problem. Or, I thought I was good with my scheduling, only to find out I was two weeks behind. Also a problem.

All these things seem to get better or worse with me at unexpected times. I’ll think I’m doing great, then WHAM, I get smacked upside the head with obvious evidence to the contrary. It’s a little daunting at times. But I can’t let it stop me from taking chances and living my life.

The thing is, though, that I’ve learned over the years to notice the times when I’m 100% confident of something — so confident, I’d stake my life savings on it (not so much money, these days, but you get my point). At those times, I find it’s when my judgment is most clouded, and there’s the greatest chance that I’m just NOT getting what I think I am. And I need to stop, back up, and reconsider doing or saying what I was about to do or say.

I have a bunch of great examples — the time when I was convinced I needed to go for a walk in the woods during deer hunting season, wearing neutral colors and following a deer path, instead of the main trail… or the time when I got stopped by a copy for running a stop sign, then (after they gave me a warning, not a citation), I proceeded to jump out of my car and run over and start yelling at them because I didn’t feel like they were very respectful of me and they treated me like a common criminal… or the time when I decided it made good sense to take a job I couldn’t really do, for about 20% less annual salary than I could live on.

Had I stopped and thought about those things with more clarity, instead of going with my overwhelming impulse, I could have saved myself much trouble — and avoided the close calls I had.

On the one hand, slowing things down feels really restrictive. I don’t want to slow down! I want to charge full speed ahead, with every fiber of my confident being! On the other hand, it just makes good sense to take a considered approach. Obviously, there are times when I can’t hesitate, or I’ll be lost. But at other times, when I have a little while to reconsider what I’m doing, it often makes perfect sense to do just that — hold off a minute or two, give it a little bit, and then reconsider what I’m about to do and say.

Live and learn. Live and learn.

Tracking my progress, step by step

I’ve had some questions from folks about how to use the log pages I created. Here’s how I do it, with some sample info filled in the way I fill it in. I created four different forms, filled out with sample details, like I do. You’re welcome to use these as templates for your own self-therapy/rehab.

Again, the way you do this — if you do it at all — is totally up to you. But this is how I do it:

  1. I start out the day, recording how much sleep I got, and listing the things I want to get done, as well as when I want to do them — as shown in the attached Morning Log Sample. A lot of times, I’ll list out things I plan to do, the night before — e.g., when I intend to get up and go through my morning routine, etc. I tend to write down even the smallest activities, if they are significant. I list things like the steps of my morning routine and standard-issue activities which are the bread-and-butter of my daily ritual, no matter how “basic” get included, if they are important for me.
  2. As my day progresses, I keep track of what I’m doing, and how I’m doing it. Like in the attached Noontime Log Sample. It might seem like a lot of work, but really, when you’re actively managing your time and you must keep to a schedule, it’s not optional. And when you incorporate it into your daily life, it’s really not that much effort.
  3. Later in the day, I’ll fill in more information, like in the attached Afternoon Log Sample. Keep in mind that this day’s info is a Sunday — a light day for me. If it were a weekday, I would have a lot more detail and a lot more stuff listed to do.
  4. At the end of the day, I’ll fill in my daily journal, like in the attached Evening Log Sample. I use a highlighter to mark the things I’ve gotten right, and the things I messed up. It’s important for me to distinguish between the things that turned out differently because I messed up (shown in red) and the things that turned out differently just because priorities changed or I did things a little differently (shown in orange). I also do my “360 feedback” journaling. I don’t write a whole lot, but I do spend some time examining my day and thinking about what went right and what went wrong. I really try to focus on what I did right, since there are days when those experiences are rare, and I need as much positive reinforcement as I can get. But I also really think about the things that went wrong, keeping in mind what I will do differently next time.

Again, it might seem like a lot of work, but when you incorporate this practice into your daily routine, it becomes a way of life.

“An unexamined life is not worth living,” someone once said.

That sounds depressing, so I prefer to say, “An unexamined life leads to much more difficult living.”

Truly, the price of taking the time to examine my activities and follow up on them is well worth the value I receive in return. It’s when I don’t do my daily tracking and logging and self-assessments, that I get into trouble.

Oh, one last thing — if I have a long series of unfinished tasks and things I messed up, over and over and over again over the course of days and weeks, I pay special attention to that and make a priority of learning about it. Over the extended term, I look at my log pages and I watch for patterns. If I see that I am failing regularly to get certain things done, I explore that and then do research on it. And if I look long and hard enough and am focused enough on it, I can often find info that helps me deal with the issues, and overcome them.

For example, I have a fairly long list of action items I am responsible for following through with at work, but I haven’t been able to start a number of them, for lack of motivation (and difficulty with initiation).  So, I did some research on motivation and initiation problems, and I learned that I may have issues with my cingulate gyrus, so I’m paying more attention to my initiatory abilities and doing some exercises to improve how that part of my brain is engaged.

It can be a bit daunting to do this every single day — and the stack of papers I’ve got showing what all I’ve tracked is a little overwhelming. But unless I track myself and take a look at what I’m doing on a regular basis, I don’t have the chance to do a course correction, and can I end up stuck in a bad groove that just drags me down.

So, I track myself. And it helps.

It might just help you, too.

Okay, FINE, I’ll self-assess!

Well, the long weekend is almost over, and I’ve been spending the past few hours logging my experiences from last week, so I can share them with my neuropsych this coming week.

I keep daily logs of the things I plan to do, and I also track my successes/failures when all is said and done. Being the busy (compulsive?) individual that I am, I usually have a full page, each day. I use color highlighters to mark the things I get right and the things I don’t. Green means success, pink (which I hate) means failure because of my cognitive-behavioral/physical issues, and orange means something got in the way or I didn’t complete things for a benign reason (like I ran out of time).

I also have a log in my computer (aren’t spreadsheets wonderful?) where I list the things I’ve planned to do, and how they turned out, and what the reasons for my successes/failures were. I have been typing in my last few days’ worth of experiences, and as usual it’s a real eye-opener.

I tend to get very caught up in the moment… lose track of things I was working on a few hours or a few days before hand. I am very present-oriented, as well as future-oriented. I guess enough unpleasant, confusing mess-ups have happened in my recent and distant past, that I just got in the habit of not paying any more mind to experiences, once they’re over.

That’s fine, if I don’t care to ever learn from my past… but these days, I’m feeling more and more like I really need to pay attention to my lessons, get what I can out of them, and make a lot of effort to incorporate them into my life.

So, I’ve been logging my experiences into my computer log, so I can take them with me and discuss them with my neuropsych this coming week. It’s funny — they have been so supportive and encouraging and impressed wtih my progress… I’ve kind of gotten the impression that they don’t fully appreciate the range of my difficulties and how they get in my way.

Good heavens, but I keep busy! Good grief, should I say… My hands are tired from doing three pages’ worth, and my head is spinning with what I’m seeing. Basically, the pattern that’s emerging is me jumping around from thing to thing, not completing some important tasks, and running off to do side projects for no other reason than that I can.

On the other hand, I have made some really substantial progres, here and there. But I haven’t taken the time to really sit with it and appreciate it. Things like me getting my 2010 priorities in order… cleaning my study at last… doing my daily exercise… and taking really good care of my house… These are very important things I’ve accomplished in the past week, and I need to pay attention to them. I need to give myself some props.

I also need to give myself a good swift kick in the rear, because there are a lot of things I’ve let slide. It’s not enough for me to make a list in the morning, check some things off, and then not pay any more attention to it, after 2 p.m., which is my pattern. I really need to stay on top of myself, or I’m going to get hopelessly swamped in partially-finished projects. And I’m also running the real risk of taking on too much — yet again — which can spell disaster when it all comes to a head, and the non-essential things are crowding out the essential ones.

I must admit, I hate to self-assess. It’s difficult and painful and awkward and it reminds me of all the problems I have.

But it’s a new year, and I really have no choice but to change my dissipating ways. I need to rein myself in and buckle down to get done what I need to get done — what I’ve promised my boss I’d get done.

I expect to feel like crap for another day or so. I always feel terrible about myself and my life, when I start self-assessing. It’s so uncomfortable for me to see all the things that are amiss in my life… all the things that need fixing. But what’s the alternative? Leave them alone, and leave myself to rot? Don’t think so.

I can do better than that.

And so I shall.

How I deal with the source(s) of my temper issues

Over Thanksgiving, I was telling someone for the first time about my mTBIs, and they asked how I figured out it was a neurological thing, and not just me having a bad day.

I rattled off “cognitive problems” and “memory issues” and “tinnitus” and “constant headaches” as examples. One of the folks who was traveling with me, who has known me for nearly 20 years said, once and for all, “Rage — it was the rage.”

I was abashed to admit it then, and I still am, but it’s true. The sudden violent rages – the yelling, smashing things, going off on people, becoming infuriated over very minor things, rolling along at a full boil, completely unable to stop my downward plunge into the blackest and most aggressive of moods… It’s always been rough for everyone — myself and everyone around me — to weather my tirades. But dealing with the aftermath — mending the broken ties, or having to say goodbye to people I hurt beyond repair, or having to look people in the face after I’d roasted them over the blazing fire of my temper — the aftermath has been at times even harder and more trying to deal with, than the events, themselves.

I can identify a number of sources of my temper flares:

  1. Fatigue – not getting enough sleep makes me think slower, and when I’m not processing quickly enough, my frustration level goes up, while my ability to monitor and manage myself goes down.
  2. Not eating properly – being hungry makes me mad quicker, and eating junk food stresses my body and makes me even more volatile than usual.
  3. Being/feeling alone – I feel assailed and overwhelmed and put-upon, when I’m alone (either for real, or perceived)… I often feel like I can’t keep up, and I’m going to pay for it.
  4. Not preparing adequately for stresses that I know are coming down the pike – not only does this open me up to the increased stress of the unfamiliar, but I also tend to beat myself up for not being better prepared, which just throws gas on the fire of my temper.
  5. Self-recrimination/blame – being hard on myself makes me even more aggressive and short-tempered with others, while cutting myself some slack eases my attitude towards others.

Ironically (or perhaps not), what is best for others, is when I take care of myself. When I’m in a good place and I’m happy with who I am and my place in the world, I tend to go easy on others, have patience, do well. But when I’m hard on myself, everyone around me pays – big time.

So, I:

  1. Make a point of getting enough sleep. Sometimes I work from home, so I can nap mid-day.
  2. Plan my meals and eat well-rounded meals and avoid junk food like the plague it is. I also stay away from sugar, which whacks me out.
  3. Reach out for help, either by contacting a friend/relative, or going online and either researching or participating in forums to help others and get help.
  4. Plan my days and weeks and months ahead of time. I can’t tell the future, but I do know that if I’ve got a lot of appointments in one week, I’m likely to be more tired along the way, so I try to schedule in some down-time. If I’m traveling or visiting family, I try to prepare myself mentally and emotionally for the trips. And if I have a busy week coming up, I try to “choreograph” my time as best I can, so I can dance my way through, instead of bumbling about, bumping into everything that gets in my way.
  5. Go easy on myself, make lists of things I do right, make lists of things I’m grateful for, remember how far I’ve come and how much I’ve accomplished in my life. Even if some of the things don’t seem like big deals to others, they may be to me, so I try to claim every small victory I can.

TBI and temper often go hand-in-hand, but if I know my stressors and I am aware of how my life is shaping up, I can often head off problems at the pass.

Most of all, I try to keep an open heart and a clear head and seek to help others whenever I can. Seeing that others have troubles, too, and seeing that I can help them, not only makes me feel grateful for all I have and makes me grateful for what I can do, but it also gets me out of my head… which can be a very dangerous place to be trapped.

Getting a grip on my fatigue

As much as I hate to admit it, I’m tired. Really tired. I hate being tired. And the odd thing is, the more tired I am, the harder it can be for me to see that I am.

I tend to just drive myself — the more tired I am, the harder I push — and I end up getting in over my head, taking on all sorts of projects, writing, drawing, painting, doing-doing-doing…

It’s just crazy.

Over the past year, this really hit home with me, as I looked through all my notebooks for what I’d been doing with myself, and to see if there were any indicators that something was not quite right with me, when I thought it was. What I found were pages and pages and pages of notes about projects I wanted to start and work on… most of which I never finished, and many of which I completely forgot about, when I got distracted and started doing other things. I literally completely forgot about a bunch of projects I’d started that were intense burning desires with me, when I started.

Then all of a sudden, I went off and did something else, and I never came back to the projects.

Now, someone might say that it sounds like ADD, but it feels a whole lot more extreme to me. It really does. It’s not simple distraction. It’s having something you once loved and were 100% devoted to… simply cease to exist in your mind. It’s just dropping something you have hundreds of hours invested in and wandering away to do something else, and never, ever coming back to your original plan. It’s misplacing a notebook (or putting it somewhere you cannot see it) and experiencing life as though that notebook and that plan had never even existed.

This is something far deeper and more extreme than ADD. It’s got to be.

It’s sleep-walking through life because I am so worn out and exhausted by all the activity going on in my mind that I cannot think clearly… and I don’t realize I’m not thinking clearly, because I’m way too tired to grasp that fact. It’s never seeing the whole picture, because in the process of pushing yourself too far, too fast, too hard, you’ve shattered the image and are working off various little pieces of the whole, never fully aware that there is more to the whole than what you’re able to see.

It’s exhaustion-driven over-achievement… that ultimately goes nowhere.

Fortunately, I have (slowly but surely) come to realize the impact of fatigue/exhaustion/busy-ness on my life and productivity. And I’ve thankfully come to realize that one of the prime indicators that I’m intensely fatigued, is me thinking that I’m not at all fatigued… I’m just fine, thank you!… mistaking my agitation for energy… and doing way too much. I’ve come to realize that my agitation is not necessarily positive energy… it’s not necessarily productive drive… and it may actually be a fear-driven gut instinct to avoid the innermost anxieties that haunt and taunt me, so I don’t have to admit there  is something not quite right in my head.

It’s a physical phenomenon, as well as a mental and emotional one. The drive is a physically palpable thing… and the true fatigue underlying it is really well-masked by… fatigue.

What saves my ass, is my self-assessments. i have my list of things that I ask myself objectively, if they’re going on with me. Am I tired? Am I anxious? Am I agitated? Am I excitable? If I am answering objectively “yes” to these… and “I’m busier than usual” — I can say, “Hey, I must be fatigued!” and it sets off alarms with me. It makes me step back for a moment and check in with myself and see if I’m getting myself in any hot water, due to my over-activity. It gives me permission to admit that I’m pushing myself too hard. It gives me permission to slow down. To stop.

And then I can rest.

It’s the weirdest thing, that… but typical for my TBI experience. My body reacts to its deficits by overcompensating and telling itself it’s doing great. My brain has been altered in ways that cause it to think it hasn’t been altered at all — Adventures in Anosognosia!!!

Ha. Well, as long as I keep a sense of humor, I guess I’ll be okay. Really okay. After all, laughter oxygenates the blood and brain, so that can only help.

Making the most of my self-assessments

I’ve been doing self-assessments on a fairly regular basis, for nearly a year, now. I think the first that I started really digging in around this past February (2008), making notes about what’s been going on with me. It’s been pretty enlightening, especially considering that I had no clue to what extent my issues affected me… until I started keeping objective track.

I haven’t done the best job of staying current with my notes, but I think I’ve collected information that I can use, at present and on down the line.  I’ve resolved to do a better job, moving forward. Even if I just take a few notes at a time, that’s helpful. As long as I have it in a format that I can put with other notes. One of the issues is that I sometimes make handwritten notes, and other times I type them on a computer, into a spreadsheet or a document.

I have been trying to figure out a good way to make use of the notes I do have, so all this experience doesn’t just go to waste. I think I’m getting to a place where I can start collecting my materials and comparing my notes over time, so I can see if I’ve made any progress.

I think I have. I can tell the difference just in the past six months. People I used to annoy to no end have told me I am more communicative with them, and I make more of an effort to deal productively with them, than I did before — when I thought I was fine, but all indicators pointed to me having cognitive/behavioral issues I needed to deal with.

Collecting all my notes and looking at them, I get a little overwhelmed and agitated — angry, too — that I’ve got so much information in so many different places, and that I have to work so hard to organize it all and make sense of it. It upsets me that I’m so alone in all this — that I haven’t been able to communicate well enough with doctors and caregivers to convey the depth of my issues… that I haven’t even known how much help I really need, till lately… that even when I am able to communicate with people, their dashed hopes (about who and what I am and what my personality and life are really like) just get in the way and keep them from being really objective with me… that even if I did manage to communicate effectively with doctors and caregivers, due to recent cutbacks in funding, the chances of me getting help are even less than they were a year ago. After all, I’ve only had “mild” traumatic brain injuries, and I’m still employed, still have my house, still have my primary relationship more intact than many others (even those who haven’t sustained tbi’s)… so I need to step back and let the people with the *real* problems get access to the services they need.

And it’s true, really. I haven’t sacrificed life and limb for my nation. I haven’t had my skull smashed or pierced by a foreign object. I haven’t been in a coma. I haven’t been in the hospital. I haven’t had any medical diagnoses of tbi, because the people around me could never see that I needed help, and I even declined help when it was suggested. I haven’t sustained a terrible, life-threatening, near-disastrous, bloody open head wound that put me out of commission for weeks and months and required me to learn to walk and talk again.

I have been a lot more lucky than that. A whole lot.

But I still need help. And I have to find it somewhere. All the cumulative injuries over the course of my relatively short life have left traces – however faint – of their impact. From mood issues to communication issues. From sensory issues to behavioral issues. From my volatile temper to my willingness to just sit motionless for extended periods of time, doing and thinking absolutely nothing. I still have a long line of jobs that I couldn’t manage to hang onto — some of which I actively or involuntarily sabotaged, when the stress got to be too much. I still have the wreckage of plenty of failed friendships and people I’ve alienated without knowing what I was doing at the time, to show for my injuries.

I still have issues, and I need to deal with them, for the sake of my loved ones, friends, co-workers, home state, and country. I owe it to everyone to learn to cope with these issues as well as humanly possible, even if I cannot get “professional help” or insight and input by experts. Even if the social system is more than happy to let me fall through the cracks, I cannot — and will not — allow myself to go down easily.

I’ve got issues, so I guess I’ll have to address them myself.

I know it’s not “what the doctor ordered” for my condition. I know it’s fraught with issues and pitfalls and danger of just screwing everything up. But my doctor doesn’t really have time for me. None of my doctors really have time for me. Nor does my therapist. Nor does my neuropsychologist. Nor does the system. Nobody really has time for me — and I need a lot of time. It takes me a while to figure things out well enough to put them into words. And then it takes more time for me to work up the nerve to say the words. And then it takes more time for me to clarify what I’ve just said, because people often don’t understand me the first time around. Then it takes me more time to listen and understand their answers.

It just takes too much time for me to get my ideas across and be sure that people understand me. It takes a lot more time than anybody seems willing to give. But I’m absolutely not willing to let myself wither and die, waiting in the wings for them to notice me and take time out of their busy schedules to help me.

So, that leaves me with no alternative than to take matters into my own hands and address my issues (which I cannot seem to get across to others) in the best way possible. I know doctors look askance at this. I know this makes professional experts suspicious. Self-diagnosis is problematic. A proper course of rehabilitation should probably be put together by a qualified, certified individual with plenty of education behind them. And accurate measurements of my progress might not even be possible, coming from me. After all, I’ve got a history of brain injury.

But no one has the time to spare me — not the kind of time I need — so what else can I do? Just give up? Just take a ticket and wait in line for the next available expert, who’s probably all tuckered out from tending to the TRULY wounded? Sit around and wait to be noticed? Make a stink and force people to notice me? Pitch a fit, hire a lawyer, and expect the government to bail me out?

I don’t think so.

I have no choice. I have to deal with this myself. For better or worse, I need to take matters into my own hands and take full responsibility for my own healing, my own rehabilitation.

If the experts have something to contribute to the process, then great.

But I’m not holding my breath.

Now, back to my daily self-assessment… Today I’m doing pretty well… details to come…

I wish my therapist knew… I need more help than regular folks

First, let me say, I really like my therapist. They are insightful, patient, kind, and they  let me just say what I need to say, without getting alarmed.

But they don’t know about brain injury, and there are some things I wish they understood.

Like the fact that my brain doesn’t work like other people’s brains, and the assumptions they make about the source of my problems may not be accurate.

Specifically, I was talking last week about a relationship that’s very close to me, and they started talking about me being “codependent” with this person. Okay, first off, I’m brain-injured. That means I need to depend on others for things that regularly functioning people don’t have to. I do not necessarily have the capacity to be fully independent in all things. I’ve tried it in the past, and it didn’t work.  Even when I thought I was being independent, I was doing a piss-poor job of it.

Take, for example, the six months or so that I lived all alone, back in 1990. I’d broken up from a long-term relationship that wasn’t working, in February 1990, and then I got into another relationship with someone who was a pretty good caretaker, then got into drug and alcohol abuse, and I had to leave them, too. From about June until November, 1990 (when I met the person I’ve lived with pretty much ever since) I was on my own, taking care of myself and my apartment, going about my regular business. I was making art, drawing, sculpting, making pottery, writing, living my life… you name it. Things were pretty good, and I was doing a passable job of taking care of myself.

On the surface I was, anyway.

What most people couldn’t see, was that i wasn’t taking care of myself properly. I didn’t keep my place very neat, I didn’t eat right — I ate mostly rice and beans and steamed carrots and peas. I rarely ate a balanced meal. I didn’t go out much at all, but stayed inside and wrote and drew and listened to the radio. I had a very limited range of motion, and I wasn’t able to cultivate many friendships. I was employed for a while, then I had to leave my job and start temping because of physical issues that arose from me not taking care of myself. I was smoking a pack of cigarettes a day, and I was living in a constant fog and daze, unaware of what was going on around me, going through the motions without realizing that was what I was doing.

When I think back, I’m amazed I did as well as I did.

Then I met the person I’ve been with since then, and things started to turn around — here was someone that was able to interact with the rest of the world, whom I could “cue” off… I could follow their lead and watch what they did, and imitate their manners and get by. This person was so lively and social and so popular and in-demand with everyone them. They knew how to make people feel safe and valued and secure and happy… they were exactly the kind of person I wanted to be like. And when I followed their lead and behaved like they behaved, then I could experience life like they did, which was a much brighter and more vibrant way of living than my own. And I could buy myself time to figure out what was going on around me, by following their example and satisfying basic social requirements that others expected me to fulfill.

Writing this for others to read, it might sound like I’m just a shell of a person who just runs around and imitates others to get by. And in a way, it’s true. Left to my own devices, my range of motion in the world is so dramatically limited — I don’t feel comfortable out in public, because it’s so overwhelming for my senses. Given a choice between doing something productive and sitting motionless for hours, my brain will choose the latter. Given the choice between interacting with others and writing 100 pages of repetitive “insights” about an hour of my day, I’ll go with the writing. Given the choice (at the end of the day) between eating a full meal that takes an hour to prepare, and snacking on crackers and goat cheese, I’ll choose the snack.

It’s not that I don’t value myself. It’s not that I’m sucked into a relationship that’s compromised by codependence. It’s that I’m in a relationship that makes room for my dependence.

Calling me “codependent” makes me feel deficient. It makes me feel ashamed. I need more help than other people to do the kinds of things most people just take for granted. Given the choice between the normal thing that takes a lot of effort for me, and the irregular thing that my brain can handle without undue stress and strain, I’ll opt for the latter — and I’ll never realize there is anything wrong with it. That doesn’t make me bad, it doesn’t make me flawed. It doesn’t make me a basket case. It means I’m dealing with the limitations of a brain injury — a hidden disability that others have no idea is there, and they have no idea about the extent to which it affects me. Even I don’t fully realize it, most of the time. And people who jump to conclusions about me being psychologically compromised because of behavior that is brain-injury related really need to study up on anosognosia, before they start judging me and my life choices.

I’m realizing more and more each day, that I’m having a lot of trouble with the terminology that’s being used with me by my therapist — codependent… denial… shame… trauma… It feels to me like things that go hand-in-hand with brain injuries, are being interpreted as psychological/emotional issues…. and they get interpreted as things that I can change at will. As things that a little self-awareness and psychotherapy will solve. My question is, if an issue has neurological roots, how can a brain that’s been impacted be expected to fully grasp and deal with what’s going on with it?

It could be that I am never fully independent. I never have been, as much as I’ve wanted to be, and I may never turn out that way. But I don’t see why I need to be judged for it, or urged to be something I’m really not.

Reverse-engineering my “depression”

I’ve been thinking a lot, lately, about whether or not I’m depressed. I posted yesterday about how someone asked me if I wanted to end it all, and how I said NO, in no uncertain terms.

I’m getting ready to go see my doctor in a little bit, and the first time we met, they thought I might be depressed. They told me so, the second time I went to see them.

Here’s the thing: Going to see a doctor who thinks you’ve got a problem, and who is in a position to “do” something about that supposed problem puts me in a precarious position. I’m not a big fan of pharmacological solutions for emotional issues — some people are chemically and clinically depressed, there’s no disputing that. But if I’m not chemically or clinically depressed, but I’m medicated as someone who is, might that not complicate things even more for me – even more than they already are?

I mean, I have a hard enough time keeping up with my life without my senses being dulled and my processing being interfered with by meds. Plus, some anti-depressants have been shown to produce suicidal behavior in some folks. That’s about the last thing I want.

In my seemingly eternal search for what’s going on with me, what — if anything — I can do about it, and how to best make the most of my amazing life, I have found it quite helpful to first seek to understand the underlying facets and aspects of my situation, before coming up with a solution for what appears to be wrong. I’m an engineer by nature, so in order to move forward with courses of action, I need to understand what all is involved, what the different considerations are, and what my desired outcome is.

Here’s what I think about the “depression” that others seem to think they’ve observed with me:

The first time I went to see my doctor, I was in a pretty wary state. I have not had a lot of luck with physicians over the years, and I have a lot of trouble communicating. I am very aware of doctor-patient power dynamics, and the situation tends to make me nervous. I haven’t the faintest idea, sometimes, how to behave in a way that makes a doctor believe I’m a nice person — I get agitated, and when I do, I can get defensive, combative, argumentative, passive, aggressive, non-verbal… you name it. When I perceive myself to be in danger — and going to the doctor sometimes makes me feel that way — my worst symptoms get triggered and I resort to behavior that is not productive. If I could stop myself or alter that, I would be happy to. But when I perceive my personal safety and self-determination to be fundamentally threatened, well, all bets are off.

Anyway, when I’m in this place, it’s not good. And I’m keenly aware of it. So, when I went to see my current PCP for the first time, I was bound and determined to be on my best behavior. My relationships with my 3-4 prior doctors (I’ve had at least that many, over the past 10 years) ended on sour notes, all across the board, and I didn’t want that to happen again. I HAD to at least try to get off on the right foot with this doctor, who was recommended by someone I really trusted (a rare thing). I did not want to completely screw up my new relationship. I wanted to build a working partnership that could really work.

Needless to say, I was a bit stressed, going into the office. I was on high alert, trying like crazy to make sure I didn’t say or do something that would completely irritate, antagonize, and alienate this individual. It was almost like holding down a wild animal … trying to hold back a large, aggressive dog on a leash… All the past failures with doctors kept running through my head, and all I could think was, “Don’t screw this one up… Don’t screw this one up!”

I thought the conversation I had with the doc went really well. I liked them and they seemed really on the ball. Engaging and compassionate and highly intelligent, not to mention a little intuitive, which can be helpful when I’m at a loss for how to communicate to someone. I wasn’t rude, I didn’t say or do something that was completely inappropriate, I didn’t lash out, I didn’t make a snide comment about something that alarmed me, I didn’t make myself look like a total fool. I was poised — I thought — and polite and coherent. I was really happy.

But when I went back, the second time, the doc said they thought I was depressed.

I suppose on the surface it might look that way — apparently low energy,flattened emotional effect, slow responses… Over at The National Institute of Mental Health, they say:

Symptoms include:

* Persistent sad, anxious or “empty” feelings
* Feelings of hopelessness and/or pessimism
* Feelings of guilt, worthlessness and/or helplessness
* Irritability, restlessness
* Loss of interest in activities or hobbies once pleasurable, including sex
* Fatigue and decreased energy
* Difficulty concentrating, remembering details and making decisions
* Insomnia, early–morning wakefulness, or excessive sleeping
* Overeating, or appetite loss
* Thoughts of suicide, suicide attempts
* Persistent aches or pains, headaches, cramps or digestive problems that do not ease even with treatment

And on the surface, it looks like a lot of them could have applied to me.

But check it out — I didn’t have low energy. I had extremely HIGH energy. And I was just trying to keep it reasonably bottled, reasonably civil, reasonably managed. I was irritable and restless, yes, but hell, I was trying to establish a new relationship with a person who ultimately has a fair amount of sway over my life — and in ways I’m not always comfortable with. Plus, the difficulties concentrating, remembering details, and feelings… hello, can we say TBI symptoms? I mean, come on… not every mental challenge is psychological. Sometimes there are logistical and physiological reasons for what goes on with me.

Now, the thought occurs to me that the fact that I’m a long-term multiple tbi survivor could make my anaylsis suspect in the eyes of the experts. After all, I supposedly am brain-damaged or something like that… (to which I reply, “Who isn’t?”)

But if there’s one thing I know, it’s my experience, and as much as the established experts may disagree with my habit of self-assessment and analysis, and they may say I have no standing to diagnose my own condition, the fact remains that there’s a whole lot in my experience that I cannot now — and perhaps never will be able to — express verbally. There is a lot inside me that may never get out. And the people who have the power to medicate me, commit me, lock me up, or tie me down, can never know the full spectrum of feelings and thoughts and experiences inside this singular head of mine.

Anyway, I’m getting all agitated, and I want to chill out before I go see my doc again.

So, I’ll quickly talk about my therapist, who the other day asked if I wanted to end it all.

NO, I didn’t want to end it all. I was tired, I was taxed, I was coming off a neuropsychological testing session that brought me nose-to-nose with some of my most persistent issues and made me feel like crap. Plus, I was having major sensory issues — with my hearing and my vision being so sensitive, they were driving me nuts. And my familiy situation has been tense, off and on, with money being something of an issue, and my job situation being under the gun. I was trying to sort things out in my head, trying to keep my balance, trying to just get clear on some things, and I was feeling physically low. I was also concerned about my safety, since I was driving home later at night, and I’ve been having some problems dealing with the headlights of oncoming cars.

My mind, quite frankly, was really over-taxed with trying to figure so many things out and trying to come to terms with a lot of stuff in my experience that hasn’t been pleasant, but has been… there. If anything, I wasn’t depressed — I was over-stimulated, and I was trying to sort things out. I was trying to just stay chilled and not freak out over all the unknowns in my life. I wasn’t depressed — I was busy thinking things through and trying to keep my balance. Trying to keep civil. Trying to be productive and pro-active. And I was tired.

I think the big reason I get freaked out over the idea of anti-depressant medications, is because the last thing I want/need when I’m in a place like that, is to have my brain slowed down and interfered with. I need ALL my faculties to figure out my life, sometimes, and if I introduce medication that mucks with my mind — even if it makes me feel a little better — then my most important coping tool is compromised. The very thought of slowing down my thinking or interrupting the natural flow of my brain — even if that natural flow is uncomfortable or “depressing” at times — really concerns me, and I feel like my very survival is being threatened.

I can’t just jump on the pharmacological bandwagon, in hopes of patching up little bumps in the road. I need all my faculties, even if they are impaired in some ways at some times, to get by in the world. And if I spend my energy — or divert it — to smooth over the little issues, then the bigger core issues may be overlooked and never constructively addressed.

For those who are in need of anti-depressant medication to get through life… who are otherwise incapacitated by depression and are in danger without intervention, I say “Mazal tov and good fortune to you.”

But when I just seem a little “down”, I’m not necessarily depressed. Could be, I’m just working really hard to keep my head clear and function in a productive, polite, pro-active manner that doesn’t pose a risk to myself and others, because my brain sometimes misfires when it’s under pressure.


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.