After concussion – I’m not stupid, you just think I am

This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:

  1. Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
  2. The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
  3. It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
  4. The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.

So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.

The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.

In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.

I do not have a disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.”  It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!

I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.

The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and  past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.

Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.

But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.

It’s best that I just steer clear.

And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTS about people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.

Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.

For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.

I am not an idiot. I am not simple-minded. I am not intellectually impaired.

I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.

Is that so much to ask?

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Taxes, Healthcare, Day-to-Day Tangled Messes – Complexity as a form of social control

Got ‘er done

I finished my taxes last night.

Hoo

Ray.

Now, I need to refile some other taxes which I messed up in years past. I figure, I’m still in tax-filing mode, so why not?

I messed up, years ago, thanks to a number of factors — not least of which was my TBI in 2004. I just wasn’t doing that great at handling complexity. Even with my tax prep software, just collecting everything together and organizing myself was a monumental task.

I managed to do it, but I did it wrong.

And that really messed with my head.

It messed with me so completely, that I missed the re-filing deadline last year, and I missed out on recouping thousands of dollars that I really needed. That’s on me – I should have reached out for help, but I didn’t. I guess my pride got the better of me on that one.

Anyway, now I’m busting my hump, trying to get myself into the frame of mind that will let me finally do these remaining taxes.  Git ‘er done, you know? And considering how challenging it is for me, I can only imagine how challenging it is for others who are in much worse shape than I am.

And it occurs to me that the powers that be probably profit handsomely from our confusion. We pay too much, because we don’t understand how to navigate the hidden complexities that could give us an advantage. We don’t get the refunds we deserve, because everything is far too complicated for us to grasp, and we don’t always know where to turn for help. When we do manage to reach out for help, we’re still screwed, because we may not know how to talk to the person(s) who are helping us. We might not be able to communicate our situation, and so we don’t get the assistance we need.

This can apply to taxes, healthcare, and just about every other complicated thing in life. Especially where older and/or cognitively impaired folks are involved. Seeing what my spouse went through after their car accident, where they totaled our van and had to talk to all sorts of insurance folks and navigate the healthcare system, made it all the more clear to me just how disadvantaged people can be… simply because everything is so hugely complicated.

If you don’t think the way the people in charge think, you’re so out of luck. You’re on your own, really — this is America, after all. And unless you learn how to fend for yourself, you’re pretty much out of luck. On the one hand, this is great incentive for people who have that kind of orientation and are able to adapt and learn — or at least take a beating and keep on going to fight another day. But for people who are genuinely impaired and who need assistance… well, shit. You’re just out of luck.

Now, this is not to excuse people who just can’t be bothered to get up off their asses and make something of themselves. We all know people like that — who use every excuse to get themselves off the hook and not live up to their potential.

This is about recognizing that not everyone has the same skill level or capacity to think things through and navigate tricky situations, as the people who design the convoluted systems of our lives. It’s about recognizing that the way things are structured, these days, has become so specialized and so professionalized, that everyday people are being cut out of their own world. If you’re not professionally trained or you don’t have access to assistance from someone who knows (or can figure out) the whole system, you’re pretty much screwed.

Of course, there are plenty of people who will help — for a fee. There are also people who will help for free.  But it’s not always easy to find them. And you may not know exactly what to ask or what you need help with, when find them.

All of which seems like a really cool way to “manage” society — split our culture into levels and classes, putting the people who organize things at the top, people who can figure things out in the middle, and people who can’t make sense of any of it, at the very bottom. I’ve been in all three classes, over the course of my life — as many of us are, in a variety of ways — and scraping the bottom of the barrel is no fun at all.

The thing I can’t help but keep coming back to, is the idea of how much money the federal government makes off us, how much power they hold, and how much they do, simply because they’ve created a system that’s far too complicated for any average, normal person to get their head around. If everyone understood how the tax code works and had the wherewithal to get every penny back that they are owed, how different would things be?

I don’t know the answer to that. Maybe it wouldn’t be that different from how things are now. Some people are naturally inclined to amass power and abuse their position. And those people tend to gravitate towards powerful positions. Even if we did get rid of the god-awful tax code and went to a flat tax for all (which I strongly support, by the way), there would still be people who would seek out positions of power and control in other ways. Maybe having a convoluted tax code serves as an outlet for people who absolutely crave the experience of screwing everyone over, and it keeps them from branching out into other areas, thus sparing us their sickness of mind and spirit in other more obnoxious ways.

In any case, the whole system is a screwed-up mess in more ways than any of us knows. For me, rather than tilting at the windmills of social injustice, I’m fending for myself. For many, many years when I was younger, I was bound and determined to change the overall system. That got me nowhere.

Now I’m focused on building up my own skills and becoming as self-sufficient and independent as humanly possible. The things that would give me an advantage in the world — namely, a college degree and social connections to people who can be of assistance to me — are pretty much out of reach. I doubt I’ll ever have the time or money to go back to school and put in two years of academic work required to get a degree. And fatigue and exhaustion are such major factors with me, that I am absolutely done by the end of each day. And I spend my weekends just getting back up to normal speed. So, I don’t have the energy for socializing and getting into the circles of people who can help me get ahead.

Even if I could do all that, I’m not sure I’d want to. I think those ships have sailed for me, and I’ve gotten so accustomed to making my own way, it suits me now. I don’t want to be in the midst of a corrupt and corrupting system. I need to be on the outside, making my own way IN my own way. It works for me. And from what I see of the people around me, it works better for me, than it does for them.

Anyway, I’ve got a full day ahead of me, so I’ll sign off now. With any luck, by the end of today, I’ll have a prior year’s taxes refiled and I’ll be able to check that off my list.

Onward.

When everyone gets to feel their limits

Slow down folks – it saves lives

Winter storms have really knocked the hell out of many parts of this country, this year, and as I watch the news and hear about regions with thousands of people stuck on highways, and snow coming down, down, down, there’s a part of me that’s a little grateful for the experience.

NOT the bad experiences, where people are killed or maimed or otherwise injured, but the experiences where everyone gets to find out what their/our limits are, and we all have to slow the heck down.

That part I really enjoy — the forced patience, the not-going-anywhere-fast conditions, the curtailed mobility… for once, I am not the only one who is forced to improvise, to get through the day. I don’t revel in the discomfort of others (well, maybe a little bit). It’s just that for once, I’m not the only one in the room who has to think through and re-think every danged thing I do.

You know, it’s funny — I’m so functional on a daily basis, and I do such a thorough job of covering up my issues around people who have no clue (who are the people I can’t afford to show/tell, because they don’t deal well with any sort of differences of ability)… I often end up tricking myself into “buying my cover”. I tend to be so focused on what is in front of me, blocking out any distractions around me, that I don’t even notice the things that would make other people absolutely insane in a relatively short period of time.

Seriously, I can be incredibly focused. My former boss actually mentioned this on my last performance review — that I blocked out distractions and got a shit-ton of work done (they didn’t say “shit-ton”, but it was implied, and it was quite true).  But that focus also keeps me from noticing the busted-up things that need to get fixed: my injured neck and shoulder that refuse to heal up, the headaches I develop anytime my heart rate goes above 120 (I’ve been tracking it for the past couple of weeks at the suggestion of my neuropsych).

And then there are the things that never seem to go away. The vertigo and nausea that seem to follow me everywhere, the constant ringing in my ears, the chronic aches and pains that never exactly go away, just move around to different places. Fatigue, sensitivity to light and noise and touch, insomnia, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo issues, difficulty reading and learning new things, nystagmus, tremors. And so on…

If I paid attention to them all, I’d never get anything done.

I’m so focused, I don’t even notice when I get hurt. Like the big-ass bruise that showed up on the back of my right hand yesterday. You’d think I’d remember hitting my hand that hard, while I was doing some work the other day. It’s at a really tender spot on my hand, too — where the tendons/ligaments are close to the skin, and it hurts like hell when I knock my uninjured hand against something.

That’s the kind of injury you’d think I’d notice. But no, I have no recollection of having hit my hand, and for all I know, I didn’t even notice when I got hurt.

This has happened many times, before — bruises typically show up on my legs and arms after I work, and I’m not surprised. I’m a bit of a bull in a china shop, that way, so I expect to get banged-up. I always have, and I figure I always will. But not being able to remember when it happened… that’s a challenge. How the hell am I supposed to explain that to doctors, when they ask me what happened? The worst case scenario is that they think I’ve got some serious mental illness from past trauma, where I block out the experiences (some of my therapist friends of years gone by ran that one on me), and they think I’m living in an unsafe environment.

Please. It’s not that. I just can’t remember.

I’ll have to make a note of this and discuss it with my neuropsych. That, along with the patterns of developing headaches after exercise and raising my heart rate.

But I digress.

The point is that I have really changed how I live my life, to work with all these issues I’ve got. In the past, before I started my TBI rehab, my life was really run by all my issues, and I just accommodated them and lived in a very limited state. I let my emotions run me, and I didn’t deal well at all with all the “details” of my neurologically varied life. Everything ran me — through my emotions. The anxiety was out of control, I battled through each day with constant headaches and dizziness and pain, I struggled constantly with the ringing in my ears and the memory problems, and I was frankly just grateful to get through the day.

Over the past 5 years or so, since learning about TBI and getting a much better understanding of my situation and what I can do about it, my approach has changed. I do what I can, I accommodate what I can, I address what issues I can, but I don’t let them stop me. I do what I can, learn what I need to know, and just keep going. And that means a laser focus that shuts out everything that might distract me from my ultimate goal.

My ultimate goal can be as simple as getting out the door and on my way to work on time. Or it can be as dramatic as launching a new business venture that has a lot of promise.

But even with all my focus and intention and intensity, I still have to take things slower than I’d like. I have to slow down and think things through much more thoroughly than ever. I’m much more deliberate than I have ever been. I realize now that the impulsiveness that I always thought was “freeing” is actually keeping me from really living the best life possible. And when I don’t slow down, I pay the price for careless mistakes. Pacing myself has turned out to be my secret weapon in getting my act together and getting on with my life.

But the slower pace still makes me nuts. Some days, I don’t want to have a list of things to be done, and check it frequently to see what I’m supposed to be doing. Some days, I don’t want to have to think through every little thing and weigh the pros and cons. Some days, I just want to wing it and see what happens.

Unfortunately, I often discover that “winging it” sends this little bird into the engines of a passing plane. Not good. And not just for me.

So, I learn — and re-learn — the best way for me to do things. Even though it makes me nuts, it’s worth the effort and inconvenience.

But it gets lonely, for sure. Some days, I feel like I’m the only one in the room who’s not “getting it” immediately. I have to ask my coworkers to repeat themselves. I participate in conversations at work that I feel like I should understand, but I’m not getting all the details. And the details that others seem to grasp very quickly, I’m still muddling over in my head, which is painfully apparent when I am speaking up later in the meeting, after everyone has moved on, but I’m still stuck on earlier details. It’s embarrassing. I’ve got more professional experience than all the folks in the room combined, but I can’t seem to access it nearly as quickly as they can.

Great.

The thing that sucks the most, is that addressing this shortcoming is almost impossible. Because later on, I can’t remember the exact details of what all happened, and I can’t explain the situation very well to the one person who could help me. It’s very unclear. And I get all garbled and turned around, when I try to explain to my neuropsych. So, I suspect they don’t really appreciate the depths of my difficulties… because I can’t seem to articulate them in a way that makes any sense to them. They seem to think that I’m overreacting, that I’m getting overly emotional about things, or that I just have a poor self-image. In some ways they do get that I have issues — my accounts of road rage and picking fights with police officers is a pretty clear tip-off. But in terms of work, I just can’t seem to express what’s really going on with me with my processing speed and comprehension problems, and how much of a problem it is for me.

So, I need to come up with a better way of handling this — not only rely on my spotty, Swiss-cheese memory (such as it is) to relate my experiences, but actually write down what happens, when it happens… and give it to my neuropsych to discuss when we meet. That way,  I can record what happened at the very time it happened, so I’m not showing up babbling and blubbering and fumbling around the disorganized filing system in my head, looking for relevant pieces of information.

Yeah, I’ll find a better way to address this with the trained professional who can help me.

But it’s a tough one, because I swear to God, we could meet for two hours a day, every day, and I would never run out of issues to discuss and address… but I really need to check in with someone who actually believes in me (without some ulterior motive or hidden agenda), like they do. Seeing my neuropsych every other week is an essential boost to my self-confidence, and if I spend all my time talking about the sh*t that gets in my way, I’ll never have any positive feedback about the things that are going right, that I’m handling well.

I really need that bi-weekly boost. Because it is so disheartening to live this life, sometimes. I’m just a shadow of the person I used to be, and I’m not often a fan of the person I’ve become. I used to be so sharp, so quick, so bright. And the people who knew me “back when” whom I still keep in touch with, seem a little surprised at my present plodding state of mind, when our paths cross every few years or so. It’s disheartening, to say the least. I know I should be smarter and sharper and quicker and funnier. I used to be. But now I’m not even sure if I remember how I used to be.

It’s very “Flowers for Algernon” — like at the end of the book when the mentally challenged guy who took the meds to help his brain, is losing the positive effects of the drugs and is going back to how he originally was. It’s kind of like that for me. Only I’m not going back to where I used to be, and I don’t much effin’ care for this experience.

It’s like all of a sudden aging — and realizing how quickly you’re going downhill.

Sigh.

Anyway, I don’t want this to turn into a pity-party. I get tired of hearing myself complain on the inside of my head about the things that don’t go right. This winter, I’m not alone. I haven’t been the only person who’s been slowed down, and it’s kind of uplifting to see that just about everyone around me has to take things slower. And in fact, because I’m accustomed to taking things slower — walking more carefully on slippery snow and ice, taking my time at intersections, and being more methodical in my snow-moving and rain and wintry mix techniques — I’m actually able to move faster and better than a lot of normal people around me, when weather conditions get tough.

For once, I’m the one who’s sitting pretty, just taking care of business like this happens every day.

Because for me, it does. The slower pace, the more deliberate actions, the mindfulness and caution… yeah, this is old hat for me. And because I’m plenty practiced at taking it slow, and it infuriates me a lot less when things aren’t going exactly according to my plan. It doesn’t ruin my day like it does for so many others who can reasonably expect things to always go smoothly for them.

So, in that respect, dealing daily with all the additional stuff I have going on, is actually helpful, in trying situations.

But I could do with fewer trying situations.

Couldn’t we all…

Well, enough of my belly-aching. It’s time to get on with my day and see what’s coming down the pike.

Onward.

 

 

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!

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

Do NOT try this at home

roadway-to-mountains
The road is long…

Yesterday someone arrived at this blog via the search  “hit head again make memories restore

Please. Do NOT do this! It only works in movies and comic books, and they will say anything for a buck. Think of all the cartoons about Wile E. Coyote surviving a dynamite blast. Or future superheroes surviving atomic blasts and other super-power inducing near-death experiences. Comic books and cartoons are not reliable sources of medical advice. Nor is Hollywood.

A second impact to an already injured brain can do even more damage than the first. You think your memory is bad now… Another injury can lead to second-impact syndrome, which is where the second brain trauma has even worse consequences than the first… possibilities: swelling… dramatic disability… death.

After you injure your brain, you need to rest it, to let it get itself back in order. During concussion, connections are broken, and also substances are released in the brain which impair/kill brain cells. If you don’t give yourself enough time to heal, the damage from a second impact can be devastating, even lethal. Some experts advise taking at least three months off to heal the brain. Others say one month will do. Once upon a time, people believed it could be shaken off with no consequence. The rash of suicides and premature deaths in professional contact sports tells us a different tale.

Even after you’ve had time to heal, another head injury tends to be worse than the one prior. Damage is cumulative (not very comforting to me, as I’ve had around 9 mTBIs in the course of my life), and each injury can bring with it a whole new slew of issues. I can attest to that.

Think of your brain as a network of highways through a vast wilderness. When some of the roads get torn up, and new roads get put in their place, they can end up going some roundabout routes that are less direct than the original connections. Also, you have to let the concrete and asphalt set before you can drive on it. And you have to let the paint dry, so you don’t end up tracking the stripes all over creation and end up with a lot of crossed signals.

These things take time. And hitting your head again will NOT restore memories. I wish Hollywood and comic books would quit telling us it will.

Everything changes – let’s get past the guilt

Just look around… Seasons change, the world changes, political movements rise like tides – or tsunamis – and people change.

That includes people with traumatic brain injury. When you injure your brain, whether you know it or not, something has changed. Sometimes the change is extreme and immediately noticeable, and sometimes it’s hidden and the changes emerge only after weeks or months, even years. And if that change has been gradual and practically invisible (either because the physical changes evolved over time, or the TBI survivor is not well able to detect those changes on their own), it can be incredibly daunting to understand just what those changes have been, and what you can do about it.

At times, it may seem like nothing  can be done about it. Especially if the changes are gradual and fundamental — personality changes taking place over time in ways that you can’t exactly pinpoint when/where/how it all started. Going from being an even-keeled, easygoing individual… to an anxious, agitated person with a hot temper that will come out over nothing at all just when you least expect it. Going from mellow and easygoing to uptight and raging is a pretty extreme change, and it can look like it’s impossible to ever make it back to mellow.

But things change. People change. I’ve changed an incredible amount, just in the past three years. In the past six years, actually — the first wave of change was a result of my TBI in late 2004. And the second was as a result of my rehab. The first wave of change was unexpected and constantly traumatic in large and small ways. The second wave of change was planned and hoped-for, but to be honest, I’m not sure anyone but me really expected it to happen.

Those closest to me who saw the initial extreme changes in my behavior after my fall in 2004 were deeply skeptical about my recovery. They had to live with me on a daily basis as I became increasingly erratic, agitated, and withdrawn (and a little bit dangerous, to be honest). They were the ones who had to deal with this new person I’d become for reasons they could not understand. They were the ones who bore the brunt of my erratic behavior, my temper outbursts, my hurt and rage and fear and anger and lack of impulse control. They were the ones who had to deal with me flying into a rage, throwing things, attacking them verbally, and doing things that hurt them on a much larger scale — losing my good job and not being able to hold down steady work for longer than a year or so, not managing money, not taking care of the house, not being a present and responsible family member.

All the while they couldn’t protect themselves from that, because if they said anything, I would fly into a rage with them and become even more unpredictable.

The ones who were affected like this have had the hardest time seeing the potential of my recovery. They have hoped for precious little, to be quite honest, having seen how bad I could get. They got into the habit of handling me with kid gloves, treating me like a mentally impaired loser who needed to be coddled and kept cool at all costs. They had gotten used to the routine of carefully checking me out to see how I was, and then walking around on eggshells to keep me calm and non-agitated.

The human brain is an amazing thing. It watches for patterns, it identifies recurring dangers and situations, and it reorganizes your behavior in order to minimize risk and maximize safety. And the brains of those closest to me had become reorganized around the idea that I was pretty much a lost cause who would generally give things a good effort, but would never really amount to anything, and who would — as likely as not — end up in a temper flare-out that ended badly for everyone.

You know, it’s interesting how nobody really seems to talk about mood problems and anger/temper outbursts with traumatic brain injury. At least, not while the person is alive. One of the remarkable things about reports about CTE (chronic traumatic encephalopathy – the brain disease similar to Alzheimer’s that has been found in the brains of former pro football and hockey players — as well as a student football player), is that just about everyone talks about crazy-ass mood and behavior changes taking place after the person is dead and gone. But while the person is alive, there’s nary a hint that something is amiss.

Take for example  Shane Dronett, Bob Probert, Dave Duerson, and many other players who have posthumously been diagnosed with CTE. During their downward spirals, their situations didn’t make the news. Part of that, I’m sure, is because their falls from grace — erratic, violent behavior, business failures, unemployment, ending up living in their cars, in and out of jail — are not the sort of thing that people want to think about. Especially if it’s apparent (as it often is) that their situations arose from their former jobs of keeping us entertained by sacrificing their bodies — and brains — without any regard for their own safety. There’s a guilt that is never quite articulated by society at large, not to mention the families and friends of those in trouble.

Society has a hell of a time accepting these sorts of dissolutions. And friends and family too often feel responsible, as though they’ve somehow brought the violence and outbursts and erratic behavior upon themselves.

And then there’s the guilt of those who ARE in trouble — the confusion, the frustration, the anxiety, the depression. The constant trying to make it better, followed by recurring failures. Guilt and shame. Resolutions to try again… and then abject failures that can’t be explained.

One of the worst things about TBI is how it can strip you of your dignity. And when the people around you see — and are horrified by — your descent into behavior that is so “unlike you” that shame and guilt can be well nigh impossible for anyone to get past. People look away from what makes them uncomfortable. They distance themselves from aberrations. Want to become invisible? Present as someone with a disability of some kind, and watch people avert their eyes. Like Kevin Spacey’s character in The Usual Suspects, if you exhibit some sort of behavior that makes others uncomfortable and you don’t seem to be able (or willing to) change it, you can find yourself marginalized pretty quickly.

The problem with all this is that with TBI, one of the most important elements to recovery is social interaction. Connection with others. The ability to have community and connection with others. We are social creatures. We crave connection. Our brains are social organs that grow and change and adapt, based on social interactions. And when we are pushed to the side, marginalized because of our perceived differences, it just makes matters worse. It doesn’t give us a chance to come back to a place where we can be the persons we want to be, instead of the persons the TBI ushered in. It doesn’t give us a chance to practice our “social chops” and grow and improve and change for the better. Without feedback of some kind that tells us when we’ve succeeded or fallen short, recovery stays elusive. The traits and qualities that head trauma ushered in have a way of cementing themselves in place, essentially becoming the “us” that others decide we are.

That’s probably one of the most unfair phenomena of TBI — having others make up their minds about us as being a certain way after TBI, and deciding we’re not going to change, and they need to just get used to us being a certain way. When others do this, and they decide that we’re not going to change, we can get locked inside a prison of human making. It may feel safer for the people around us, if they develop these defense and coping mechanisms, but in the long run, it just makes matters worse, because it allows no room for recovery, and it locks everyone in a pattern of behavior that is far less than it could be.

It’s true — we will probably never get back to the person we were before. But that doesn’t mean we can’t become a different person of our own choosing and our own making. When we decide things aren’t going to change, and we resign ourselves to “accept the new normal” of limited options and curtailed activities, and we stop looking for what else is possible in our lives, we are neither fair nor honest with ourselves. And when we decide that injured others are permanently disabled and need to be handled with extreme care, we are giving up and consigning them to a prison of our making.

Change happens. Change is constant. And people change as much as politics and economics and fashion. We change in relation to events, but most of all in relation to others.  We mirror others. We connect with others. We evolve with others. And even in the aftermath of events that harm and hurt and kill, we can continue to change. Grow. Improve. Worsen. Deepen. Become more complex. Become more simple. We change.

But we need to be connected somehow, in order to do that.

Brianline has a great slideshow about a young woman named Freda who sustained a traumatic brain injury in a freak accident – click here to watch it. Perhaps the most remarkable thing about it, is how Freda’s friends rallied to keep her integrated into their social life, even though she was far removed from the flow of everyday life. Her family stayed with her. Her friends didn’t ditch her. Her teachers and healthcare providers worked to educate her peers about TBI. The community came together around her. And she came back.

For me, the connections that have kept me going  have been largely virtual. Connecting with people online — just about the only place I could find others who understood what I was going through — as well as one single neuropsychologist who didn’t treat me like a drug-seeking insurance fraudster who was just trying to get over on the system. I couldn’t really connect with my friends and family, because they were — and still are — really put off by the very concept of brain injury, and a lot of them had made up their minds about me a long time ago and still remain quite dependent on that interpretation of who and what I am.

The other way I’ve managed to connect is through work — the people at work, as well as the work itself. In that controlled environment, where I actively interact with others for 8 hours a day, five days a week, doing work that refines and educates me, I find a connection and a purpose that often eludes me beyond the workplace. When I haven’t been able to stay on for very long (because my anxiety level was getting so high, I couldn’t think straight anymore), I’ve been fortunate to be able to find new work, different work, to help me along. In the workplace, where I am required to interact with others, I find connections that often don’t present themselves in the rest of my life.

One of the important differences between work and my outside social life, is that there’s no room for guilt. There’s no room for sitting around feeling self-conscious. If I’m going to do my job and be fully effective, I have to engage with others on a regular basis. I have to get over my personal crap. I have to be a part of things. Or else. There’s not a lot of room for self-pity and drama. I know plenty of people who do indulge in those things at work, but for my own purposes, I can’t afford it. I have too much to do. I have too many things on my plate, to get caught up in personal dramas. It keeps me busy and it keeps me honest, and I have to constantly improve, or I sink like a rock.

The nice thing is, others at work can see I’m actively working at this. TBI doesn’t factor in at all in our interactions, because I have never discussed my situation with anyone at work, and I never will. It’s not something that needs to be part of that equation, and the last thing I need is to have to field all sorts of ignorant biases about what brain injury does to a person. It’s enough that I do my job and I do it well. The rest of it stays to the side.

And it’s tremendously freeing. Because I’m not locked away in a box made from other people’s assumptions about me and my prospects for change and growth. I’m not living under the shadow of my wary spouse who detects agitation in me and automatically begins to act like I’m a menace. I’m not constantly trying to prove to my loved-ones that I am capable of change, and that they don’t have to give up on me.

I can be who I want to be. I can be the person I choose to be, not the person others decided I was, 5… 10… 20 years ago.

People change. TBI changes people, but we can continue to change for the rest of our lives, regardless of initial setbacks. We may never go back to being the person we were, but that’s what happens with everyone, traumatic brain injury or no. Ask anyone about the kind of person they were when they were 20 years younger, and they’ll likely tell you they’ve changed a lot since then. If they haven’t, they were either uniquely evolved in their youth, or something has stunted their growth.

It’s in our nature to change. It’s in our nature to grow. It’s in our nature to improve, should we set our minds to it. With TBI comes a host of problems and issues — many of them emerging and sticking around, weeks, months, years after the injury itself. The guilt and shame and embarrassment can be pretty intense — for everyone. When you’re “not supposed” to do/say the things you are doing/saying, it can be pretty distressing for everyone. But you can’t let the distress get in your way. You just have to keep steady, keep an open mind, and keep following through to learn and grow and change for the better.

TBI does bring change. But it needn’t be a death sentence. Mild TBI needn’t derail your life, for no apparent reason. Blast injury has its own set of unique issues, but doesn’t need to destroy your future. And concussion can be profoundly disruptive, but it needn’t isolate you from the world for good.

Stay steady, stay open to change. And find out what else is possible for you and the ones you care most about.

Narrowmindedness breeds disability

Permanent Vacation is a post everyone should read. It’s important. And it’s true. And since the chances of you getting through life without encountering at least one person who needs a little extra help are slim to none, you should read it, think about it, and let it guide your future thoughts and actions.

The issues around disability have been a regular part of my life for a long time. I’ve lived with disabled people, and I’ve worked with them.

Back in the day before I fell down the stairs in 2004 and my life almost completely fell apart, my day job was ensuring that large-scale websites were accessible for disabled folks and others with accessibility needs. Accessibility isn’t just about helping the blind use a website, or offering text-based alternatives to audio for hard-of-hearing or deaf folks. It’s also about making a website usable for folks who can’t use a mouse (too much mouse use can do that to you – trust me), or for folks who needed text to be larger than the 20-something-chosen miniscule stylized fonts that folks born after 1980 seem to be particularly fond of. It covers everything from how you navigate a website to how you use the information. There’s a lot to cover, and a lot of software engineers don’t want to bother with it.

I’m not sure why – it’s just basic human decency that drives the accessibility train.

At the time I was making websites more accessible, I had no idea that one day I would have my own disability to deal with — a twice-hidden disability, no less, which is as adept at hiding itself from me, as it is at hiding itself from others. Granted, one of the things that obscures TBI as a disability is the fundamental human aversion to brain problems. We don’t want to know about it, don’t want to think about it, don’t want to explore it, and we certainly don’t want to have to live our lives around a traumatic brain injury, concussion, whiplash, or whatever else you care to call the damage to what’s between your ears.

There’s a weirdly Darwinian streak we all seem to have within ourselves, when it comes to surviving head trauma. Either we heal, or we don’t. Either we’re okay, or we’re not. No middle ground. No gray areas. No good days or bad days. Just OK or NOT OK. And if you can’t make a go of living your life after you’re diagnosed and have treatment… or after having a few days/weeks/months off to get back on your feet… and if you can’t go back to functioning as normally afterwards as you did before, then you deserve to be shunted to the back of the room/bus/line, as someone who is “just not trying hard enough.”

Well, there’s head-injured, and then there’s stupid. These kinds of attitudes towards head-injured people are just plain stupid. And they do more to hinder the long-term well-being of TBI survivors, than any amount of brain trauma.

I could get incredibly riled over this — and believe me, I have in the past — but I’ve got a full day ahead of me, doing things I love to do, so I’m not going down that road. I will say, however, that if people could just get some basic facts about head injury and its effects… if people in general could just realize that an injury to the brain is indeed an injury and it never stops affecting the person who was hurt… if people could just step back and take a little bit more time and stop being so haughty and egotistical in their attitudes toward disabled and otherwise challenged folks, the world would literally be a better place.

See, here’s the thing… A serious, enduring injury (like TBI) is not the sort of thing you can heal all on your own. It’s not like a broken leg. You can’t put a cast on it that people can see and sign — and help you with, when you’re approaching revolving doors. The brain (especially) has a way all its own, and it’s a mystery to even the most accomplished experts, how it heals — and why. And while the brain may restore itself to some extent, the full-spectrum impact of a TBI is not the sort of thing that can be healed only by the physical knitting together of the severed connections — which can actually never be restored to their pre-injury state… Once the damage is done, it’s done (from what the experts say).

The full-spectrum impact of a TBI can touch every aspect of your life, from your sleep/wake cycles, to your tolerance of heat and cold, to your ability to understand what people are saying to you, to your tolerance for frustration. It can make you jumpy and irritable and verbally abusive, and it can cause you to say and do things you would never want to do, by reducing your brain’s ability to inhibit unwanted words and action.

And what’s more, the changes don’t just affect the injured party — they affect everyone that person comes in contact with, either directly or indirectly. Even if you manage to present as perfectly normal, even if you manage to keep your act together on the surface, if you’ve got TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

  • TBIs have a nasty way of slowing down your thought processing speed.
  • Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
  • Increased distractability can lead to “careless mistakes”.
  • These can lead to arguments with others.
  • Arguments can escalate if your flashpoint threshold is low.
  • A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

Now, if the people you’re dealing with have no idea that you’re having trouble sleeping, and you take a little while longer to process what’s happening, and they don’t have a clue how quickly your temper escalates (through no intention of your own, by the way), that just compounds the problems. Everything is complicated by impatient people who are in a hurry to get stuff done, without being mindful of the one they’re dealing with. Nothing is easy, when someone does stupid stuff to provoke you, or doesn’t cut you any slack. A hidden disability has a nasty way of getting worse, when you have to deal with someone who has no compassion and no patience for others who are just operating at a different speed than them… and who say and do unkind and hurtful things, just because they can.

Truly, it doesn’t have to take much to help someone with a disability like TBI get through the day. All it takes is some understanding and humility and respect. If you know full well that everybody has issues, that everybody has an impairment of some kind (large or small), and you understand that people-helping-people is a great way to not only get the job done, but also humanize your interactions, then the abilities of both parties are enhanced, countless issues can be avoided on the spot.

The injured person standing at the counter gets an extra few minutes to figure out what they want to do, and the person waiting on them gets an extra few minutes to catch their breath in the midst of a busy day. It’s not a bad thing.

But if the people you’re dealing with don’t have patience and compassion and aren’t willing to cut you a break, they create havoc for both you and them. The lack of simple, fundamental human decency, and a close-minded judgment of those who are different in some way, does far more damage in the long run, than the actual injury itself. Treating the disabled like they’re sub-human registers with us on a deep and fundamental level that wreaks havoc with our concentration, our focus, our available energy stores. Instead of solving a problem, like ordering from a menu or discussing a customer service issue, we’re plunged into a life-and-death battle for our basic human dignity. When people who are supposed to serve us refuse to treat us with respect, we walking wounded have to shift our attention away from the real problem we’re trying to solve, and shift over to the debasing challenge of convincing the person who’s supposed to help us solve the problem that we deserve to have the problem solved.

Which is a total friggin’ drain — one that should never have to happen.

Look… everyone has issues. Can we agree on that? Everyone has some problem of some kind. There’s no escaping that fact. Some of us have more obvious or more comprehensive injuries than others. But it’s really how we deal with our problems, and how we treat others who have different kinds of problems, that determines the debilitating effects of the injury.

If someone with a TBI has more problems when they’re rushed and pressured, then others can help them out by not putting all sorts of pressure on them, and not rushing them to do and say things they need to think through, first.

If someone with a TBI has more problems when they don’t get enough sleep, then their friends and family can help them by not demanding that they stay up late to watch a movie or television with them.

If someone with a TBI has hard of hearing, then others can help them by talking directly to them, not covering their mouths, and not making additional background noise while they’re talking.

But if everyone who thinks they’re okay is locked into the idea that if you don’t behave in such-and-such a way… or you don’t think or talk at such-and-such a speed… there’s something wrong with YOU, then the small problems become much larger. And the after-effects of injuries become even more debilitating.

Ultimately, I believe there is a solution to almost every problem out there. And with the right information and the right mindset… the right education and intention, issues that are sticky can be unstuck, and disability can be diminished. But if people who are supposed to help, flatly refuse to do so, then they themselves are helping to create and perpetuate true disability.

It’s not the injury that’s ultimately the problem. It’s ignorance and smallmindedness.

A do-over makes the difference

I had a dream about my diagnostic neuropsych last night. It was a really cool dream. We were trying — as usual — to find time on our calendars to schedule our next session, and we kept getting our wires crossed and missing each other when were trying to connect… and running into each other, when one or both of us didn’t have our schedule on hand. It was actually a really nice dream, because they were very kind to me during all of it, and the weather during the dream was sunny and bright and mild (quite unlike what it’s been like in real life for the past six weeks). And even when we were getting our wires crossed, there was still an element of humanity and civility to our interactions that was, well, civilized. It was breath of fresh air, in the midst of my dreamworld confusion. I woke up feeling a bit frustrated, but also very soothed.

I think I’m surprising both my neuropsychologists with my uncanny ability to not only get by in the world, but to also thrive. My diagnostic neuropsych says my ability to adapt and improve is “phenomenal” and they’re openly amazed at my ability to turn around wretched circumstances and come out on top. My therapeutic neuropsych is still handling me with proverbial kid gloves, taking it slow and trying (often in vain) to temper my eagerness to push my limits in life. Slowly but surely, they’re getting a clearer and clearer view of how capable I am of taking care of myself in some respects, while in others I’m wandering around in the dark. This post (however anonymous it may be… they may never read it) is dedicated to both of them.

I’ve been thinking a lot, lately, about the impact that TBI has had on my life over the years. I’ve also been thinking a lot about the ways in which it has not had an impact, or in some cases actually led to experiences and successes I might have never pursued, were I not neurologically compromised.

For example:

  • If I had been better able to interact with others and communicate — and understand what was being said to me — I might  not have pissed off and alienated the editors I worked with… and I’d be a published author by now. I might not have had to learn how to build web pages to put my writing online.
  • If I had been better able to handle heavy-duty job responsibilities, I might still be in middle-management (or even upper management), making okay money and having no life. I probably never would have learned to code (and might have resisted learning to use a computer till late in the game), and I may never have thought of going into the high-paying software business, where work-life balance is more precarious, but also more “customizable”.
  • If I had been better at risk assessment, I might never have traveled and moved around as much as I have. I probably would have “known better” and played it safe, never seeing the outside of my home state, let alone the USA. I probably never would have considered living abroad, if I’d been able to make it just fine, here at home.

Funny, how that works. A lot of what I’ve done over the years, no “sane” person would do — I’ve taken big risks, personally and professionally, and I’ve probably been luckier than I’ve been smart, over the years. But long story short, it’s all turned out pretty damn’ well, and this morning, I’m sitting in my own study… in my own house… overlooking my own back yard in a gorgeous and very affluent part of the United States. I’ve got (somewhat dependable) cars that are paid for in the garage, I’ve got a kicker job, and I’ve got a spouse who loves me with all their heart sleeping in the master bedroom. I’ve got family who love me (as inscrutable and problematic as I may be at times), and I have friends who love, appreciate and support me. I’m not the richest (or even the most solvent) person on the planet, but I’m getting there. Even without the money thing all hammered out, I’m one of the richest people I know.

It’s Independence Day, so I suppose today would be a great time to talk about how I’ve managed to do so well for myself, even though I’m most definitely neurologically compromised. Despite no less than nine mild traumatic brain injuries (one assault, three falls, three car accidents, two sports concussions, and probably more injuries that I’ve completely forgotten and just took in stride — gotta get back in the game!), I’ve managed to really thrive in the world, taking things as they came and learning a lot as I went. I’ve had more near-disasters than I care to think about, I’ve had a number of brushes with mortal danger, and I’ve had to rebuild my life over again, more than once.

But in spite of all that, I’m happy, healthy, more or less whole, hale, and hearty. And I have been for years. I have issues. Of course I have issues – who doesn’t? I have experienced tremendous difficulty in navigating things that other people take for granted, and there have been plenty of times when I was flying blind. But for all that trouble, I’ve still managed to do well. When life gave me lemons, I made lemonade. And lemon meringue pie. And lemon drops. And I seasoned my cooking with lemon zest. Figuratively speaking, I’ve eaten and drunk a helluva lot of lemon-flavored stuff over the course of my life. Sometimes it was sweetened, more often, it wasn’t. But I took the bad with the good and did my best with it.

I’m not going to say my TBIs were “the best things that ever happened to me,” as I’ve heard others proclaim. That would be a lie, for they have made my life more complex and painfully awkward than I ever wished it would be. But I will say that my injuries have been a lot less logistically debilitating to me than a lot of people (including trained professionals) seem to think they’ve been — or should have been. And I believe the reason I have done increasingly well over the years, is, I never gave up. A whole lot of times that I messed up, I got a do-over… and I took another shot at what I screwed up the first time.

It’s true. A do-over makes the difference. All those times I mucked up what I was trying to do… I can’t even count them. I’ve messed up relationships, good jobs, simple Saturday chores, volunteer activities, money management, health concerns… you name it, I’ve probably made a huge mess of it, at some point or another. But as long as I got a second chance, it wasn’t the catastrophy it might or “should” have been.

Second chances are like my lifeblood. They’re the stuff that keep me going. People who know me say I’m too hard on myself, when I think that I’m going to mess something up when I first try it. But they haven’t walked in my shoes, and they haven’t seen what a terrible mess I’ve made of so many simple things.

Like the time I was jump-starting my car for the first time on my own. I’d seen it done lots of times by plenty of other people. I knew how you put the clamps on the battery terminals and let your car charge off the other running car. I’d even helped other people jump their cars lots and lots of times. But the first time I tried to jump-start my own car, I got the terminals mixed up, and sparks started to fly and the plastic around the handles started to melt, as the wires heated up to a bright glowing red. I grabbed a stick and managed to pull the cable handles off my battery before both batteries blew up, so no animals were harmed in the making of that movie. But things could have turned out worse, and we could have ended up with two busted-down cars, instead of one.

And like the time when I was putting together numbers for work, collecting all these performance stats to show upper management how well we were doing. This was, needless to say, a very important report. Well, I found a set of numbers that fit the criteria we were looking for, and I compiled this great-looking spreadsheet with graphs and everything that showed our performance over such-and-such a time. Everyone was pleased as punch with my work… until they saw that I’d pulled the wrong numbers from the wrong timeframe and the wrong servers. My end-product was fabulous, but it applied to an alternate universe. And my hours of work were for naught.

And like the time when I was making great progress on this website I was building. I did an awesome job at coding it up quickly and timing everything out so it would be ready to launch on schedule. The only problem was, I forgot to test it in this one browser that everybody knew was problematic. It had completely slipped my mind. And by the time I looked at the website in it and realized that stuff needed to change, I was starting to fall behind schedule. For someone in the web development business, this is just basic, fundamental stuff — you test in all browsers before you launch. But I’d forgotten. And I blew my deadline. And pissed off the project manager who had been so happy with my work — and had told everyone what a great job I was doing.

I can assure you, screwing up the first time around is not a foreign experience to me. But each of the times I’ve screwed up, I’ve learned a great deal. And frankly, I’ve learned more from my failures than from my successes. I just needed the chance to try again.

All I’ve really ever asked for, was a second chance. Seriously. I know I’m prone to make a mess of things on my “maiden voyages”. It’s just in my nature. I’m not being hard on myself. It’s objectively true. Ask anyone who has known me long enough to see me go down in flames… and they’ll confirm it. But they’ll also confirm that I have an uncanny ability to rise from the ashes of my own catastrophes, take my medicine, take my lumps, and climb back into the ring for another round. And when I get my head about me again and figure out what I did wrong, the first time through, I can adjust my performance to do the exact opposite… and come out shining far more brightly than many a person who gets it right the first time around.

When I look back on my life, I have to say the worst experiences and relationships and jobs and activities I’ve had, have been made that way by lack of a second chance. Sadly, my father is one of those people who has to have things done 100% correctly, the first time through — or else. And my mother has not always had the most patience with my flawed interpretations of her instructions. They got it honest — all my relatives and neighbors and other people in the area where I grew up were geared towards getting it right the first time, or else. They had no tolerance for messing up terribly, the first time through — especially by someone as ostensibly smart as I was. They just couldn’t see why I was so prone to screw-ups. Certainly, I must not have been paying close enough attention. Or I was lazy. Or I was weak. Or whatever.

What they just couldn’t see was that I was trying like crazy to get it right, the first time through. I was — I really was. But I didn’t have enough information about how to do it 100% right. Spoken instruction only went so far. Being shown things only went so far. I had to try my hand at things and find out what not to do, in order to find out what to avoid, the next time around. The times when I got a dry run to practice, I was more likely to succeed. But when I was tossed into the deep end, the first time through, I sank like a rock, as often as not. And there were far too many failures to list — and far too many occasions of people not thinking to give me another chance. If I screwed it up the first time through, what made me think I could get it right, the next time?

Thing of it was, I could get it right, the next time. In fact, the worse mess I made of my endeavor, the first time through, the greater the likelihood of me hitting a home run, the next time around.  My very low tolerance for imperfection would never allow me to make the same mistakes twice. I just couldn’t do it. Unfortunately, too many people are not built that way, and they don’t realize that some of us are. They think that true achievers get one chance and one chance only to make their mark, and if you have to keep trying, it means you’re just a wanna-be poser whose prone to biting off more than they can chew.

Well, maybe I am a bit of a wanna-be, and maybe I do tend to bite off more than I can chew. But you know what? I’m driven. And I don’t give up. And if I keep trying, and if I keep learning from my screw-ups (which are so, so many), and I don’t give in to the criticisms of others (and myself), I can really make a difference in my own life and in the world. I can actually attain at least some of what I set out to achieve. And even if I manage to meet only 75% of my set goals, if I set my goals at 200% of what others expect me to be “reasonably” able to do, then I have a chance of achieving 150% of what others expect of me. So there.

And that to me is what true Independence is all about —  knowing both your limits and your strengths and using them both to complement each other. I know I make a mess of things. I know I have a hard time with some pretty basic stuff, at times. I know I tend to overstep my bounds and over-reach. But I also know I’ve got this taproot of faith in cause-and-effect… this logical conviction that if I just keep going, feeling my way through, keeping an open mind and actively learning and putting what I learn into action… I will eventually get far beyond what anyone ever expected of me. And I will achieve nearly everything I have my heart set on. No matter what my brain may be capable of, I also have heart. And my mind — the sum total of my spirit and my brain-power and my instincts — will always keep striving for what is better, what is best, what is highest, what is … progress.

Yes, when it comes to getting things right, a do-over makes the difference. I may mess up the first time through, but a second chance makes everything better. It lets me redeem myself by getting it right the next time. It gives me the opportunity to salvage my experience by using the lessons I’ve learned to make right what I’ve done wrong. It lets me prove to myself that I’m not a total loser. It lets me prove to others that they can — ultimately — depend on me, if they just cut me a little slack and give me another chance. They simply need to resist the temptation to give up on me… understanding that I’ve got my limitations, and that I may need another shot, in order to get the task they’ve given me absolutely right, but I will not quit until I get some satisfactory results.

I can get it… I will get it. I just need to be given more chances to get it right.

The best cure for self-pity

Just when I’m starting to really succumb to the poor-me’s, I get an excellent reminder of what I really have going for me. It’s true, being a multiple MTBI survivor hasn’t made my life any easier, and I do have a lot of issues I need to overcome. But I’m also highly functional, I have full use of my body, I’m not laid up in a hospital or rehab, and I’m able to fend for myself.

My life isn’t perfect, by any stretch, but it’s a far sight better than it might have turned out, had my falls and injuries been worse. I really believe that I was divinely spared a lot of disaster over the course of my life — for what reason, I’m not sure. I’ve come close — so close — to being badly hurt, attacked, arrested, institutionalized, even abducted (when I was a kid and wasn’t very prudent about whom to talk to and how to interact with people)… not to mention sued and fired and a lot of other things people could do to me that would really mess up my life. Time after time, when I think back, I’ve narrowly escaped serious damage, literally through no effort of my own.

And I wonder, why was I spared? Why am I walking around in okay shape, after those car accidents, those falls, those attacks? Why am I able to walk through life on my own steam, when so many others are unable to do so? Why have I been given so much and allowed to keep so much of what I could (and perhaps should) have lost along the way?

What makes me any better than, say, the thousands of troops returning from Iraq and Afghanistan, who have really severe injuries — some of which cannot be detected from outside their heads?

What gives me the right to live as fully as I do, when others who experience the kinds of car accidents I was in are watching their lives fall to pieces before them, unable to think, remember, function, or even walk around a grocery store without sunglasses on?

What can possibly justify the fact that I’ve managed to keep my house, my family, my car, my job(s), even in the face of a debilitating head injury? What makes me so deserving, so special, so… worthy of all this?

I just don’t know. I look around me at the other folks who have sustained head injuries – from mild to severe – and I marvel at their resilience. I’m not sure I could hang in there the way they have. I look at the pictures and read the accounts and try to put myself in the shoes of folks who have to overcome not only the loss of their memory and their life savings, but also their most basic bodily functions.

And I am both humbled and chastised. The problems that I have — the slowed processing speed, the lousy short-term memory, the inability to concentrate on things longer than half an hour at a time, the chronic pain, the sensory sensitivities, the temper flares, etc. — as challenging as they may be, still allow me to move about the world on my own steam. They may keep me from being fully functional, but they don’t prevent me from looking and acting fully functional (which in our superficial world, is 3/4 of the battle). And as rough as looking for more work may be, the fact that I actually can look for more work, is a gift I mustn’t take for granted.

Who can say why I was spared a worse fate?

Who can say why I was knocked out for only a few minutes, rather than a few hours?

Who can say why my fall out of that tree in 1980 didn’t break my back?

Who can say why the hits I took in high school sports weren’t more serious?

Who can say why my car accidents derailed me for a shorter time than others’ do?

Who can say why I was able to hop up after my fall in 2004 and say, “I’m okay… I’m good,” and get on with my life — even if the getting was a lot less good than it was prior to my fall?

I don’t have the answers to those questions. And there’s this little voice in my head that’s warning me away from comparing myself — favorably or unfavorably — with others and their situations. We all have our challenges, and we all have our limits, and it’s not really for us to judge which is better or worse, which is easier or harder, or even if we deserve what we got.

All I know is, things haven’t been easy for me. But they haven’t been as hard as they could have been. I’ve been spared, and while I do wonder why I rate that, the bottom line is that my difficulties have made it possible for me to understand what it’s like to struggle terribly with things that others cannot see. I know, first-hand, what it’s like to be lost and alone and afraid and totally invisible to the rest of the world. I know what it’s like to live, day after day, wondering if I’m going to lose everything because of some mysterious difficulty I can’t put my finger on. I know what it’s like to be abandoned by people who were supposed to help me, and treated like shit by mean-spirited people. I know what it’s like to be preyed upon because someone senses I am at a disadvantage in life.

And since I know first-hand what all this is like… AND I am still pretty high functioning, I’m in a really great position to help. My brain is broken, sure. But my brilliant mind won’t quit. And since I can write and use this blog and I know how to get the word out online about this TBI stuff, it puts me in a really great position to educate and inspire and hopefully assist others.

God, but this world can be a lonely, confusing, depressing place. But in the worst of times, it’s so very important to identify our strengths and our gifts and pitch in to help others who are in need. I haven’t the faintest idea why I have been spared the fate of so many others like me, who had the same types of experiences but have it much worse. But it’s not for me to know.

All I can know is, I’m a survivor (dammit!), and I have abilities and talents and resolve that I can put to good use for others. I have an extra hour or two in my day that I can spend blogging before I go to work. I have a job that lets me grab a few minutes, here and there, througout the course of my day to examine my life and figure out what works — and what doesn’t — with regard to my broken brain. I have been given  wonderful gifts of resiliency, determination, stubborn faith, insatiable curiosity, and the ability to overlook my own personal pain — physical and emotional — in the service of a cause greater than myself.

I know how to function in this life, in spite of a long history of brain injuries and the personal/physical/social/emotional/financial complications that arise from them. I’ve devised coping strategies (usually from sink-or-swim situations) that have really worked for me. I’ve figured out how to find jobs and stay employed, how to make money and pay for big-ticket items, how to appear functional in the world, how to interact with people well enough to get by, how to support my memory and work with my uncooperative body, and more. I’ve had to face down a lot of real challenges, but somehow I’ve managed to overcome them. And I love to write… so what better position could I be in, than to blog about it all and hopefully toss someone a little help from my own personal experience?

So, rather than sitting around and feeling unworthy and useless and undeserving because I’m able to function well, while other flounder and founder, I think I’ll just get on with my life, get on with my day, and use what I learn for the benefit of others.

God knows, we can all use a little help. And what a shame it would be, if I were the only one who benefitted from the lessons I’ve learned!