The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Second chances – found by accident

I have a full day ahead of me. And it’s all good. I have some programming techniques to learn and test out, and I have some documentation to write. I have some busy-work to do for my day job, and I have another set of house chores I need to take care of.

The beauty part is, I can get it all done. I can do the programming for a few hours this morning, while everything is quiet… then I can move on to the chores that need to get done. Then I can have my lunch and a nap, and then move on to the other things for work-work. I’ll get a little bit of exercise, while I’m running my errands, and I’ll get out and about a bit. Heck, I might even be able to catch up with some friends for lunch.

On second thought, I need to not cram too much stuff into my day. I need to keep things simple, because life will become complicated enough on its own. Just because it does.

I feel incredibly hopeful, because I know that I don’t have to run out of steam and drag through the second half of my day like the walking dead. I don’t have to live that way anymore – especially because today is Saturday, and I don’t have to be anywhere, or do anything that I don’t choose to be or do. And tomorrow is Sunday, which gives me yet another day to move at my own pace, get things done, and really take good care of myself and my life.

Now that I have figured out how much just a 20 minutes of sleep in the afternoon helps me, and I have found a way to make sure I get a nap in regularly, it’s like I have a whole new lease on life. Seriously. It makes all the difference in the world, to not have to cram all my important activities into the first two hours of each day, and then spend the rest of the day worried that I’m not going to have the energy or the resources to make it through in top shape.

Having a nap in the middle of the day is like having two days instead of just one. It’s like that stock split at Google, which has pretty much cemented the two founders’ control over the company. Having some more rest in the middle of the day, when I have completely wiped myself out with all my going… and then having a second chance to pick up where I left off.. or just start something completely new… THAT is an amazing thing.

The other amazing thing is that having a nap in the afternoon actually helps me get to sleep at night. I can just allow myself to feel tired, not push myself through like a crazy person. I can just let myself feel exhausted, not force myself to be ON, like I used to have to, before I got into the whole nap thing. And when I really get into feeling how I feel, and I allow myself to just feel tired, then I can call it quits for the day, when it makes sense to do it, and just get myself to bed.

I did that last night, when my spouse wanted me to stay up and watch more episodes of a show we both really enjoy. I wanted to stay up a bit longer, and they wanted me to do it, too. But I just couldn’t do it. So I turned in at 11:30 — later than I wanted to, but earlier than I might have. After all, it was Friday night, so I “deserve a break” and should stay up as long as I damn’ well please, right?

Wrong. Staying up that late does a number on me. And today I woke up at about 5:30, so that means I got maybe 6 hours of sleep, if I’m lucky, which is not enough.

The pressure’s off, though, because I can always nap later. And because I have been getting more sleep lately, and I know I will have time later to nap, I don’t feel this intense pressure to be ON for the next four hours — or else. I can relax. And that’s so important.

Another benefit of getting additional sleep is that I have been making better choices with the time and energy that I do have. I have a number of new things I need to learn, and it’s easy for me to spin my wheels and run in a million different directions, but I’m better able to stop myself from getting too distracted, and I’m finding it easier to just choose to NOT do or learn or try certain things.

Life is better with naps. And I realize how much it was stressing me out, to feel like I only had about four good hours each day to work with. Nobody really gets just how exhausted I am — all. the. time.  They just seem to assume that because I can keep going, I should keep going. That because I don’t complain or draw attention to my exhaustion, it must not be that bad.

It has been bad. The fatigue has been crazy. And it really screwed up my life for years and years.

But now I have alternatives, and it’s good.

Onward.

 

 

 

There are tools we can use to fix our brains

I’ve been using my Sunday to look back on the tools I’ve used over the past 7 years to address my long-standing TBI issues. I have been noticing a “dip” in my progress, that I’m not really happy about, and I realize that I’ve gotten a bit complacent and lackadaisical, which is hurting me and my quality of life.

Give Back Orlando’s TBI Self-Therapy Guide has been incredibly helpful to me, and although the support group no longer seems to exist, I still have the guides they made available online, and I make the available here on the site. The founder, Larry Schutz, Ph.D., is now working in the Los Angeles area, and I have heard good things about the results.

I have just posted the summary of “How to Fix Your Brain” under my “BI Recovery Tools” section of this site. I need to jump-start my active recovery again, now that the long winter is over, I’ve cleared the decks of some unnecessary projects, and I’m getting some energy back. This is just the opportunity to work on some of the points that have turned “sticky” for me again.

Check it out…

Moving to a different area

Pack up what matters and take it with you

Looking back, looking ahead… As usual, when I start to contemplate a big life change — like career/job, moving, shifting the nature of my relationships, etc — I look back to take stock on where I’ve come from, and I also look ahead to see where I want/need to be.

I have been doing a bit of that, lately, and what really strikes me is just how much my mindset and my cognitive abilities and my overall ability to cope and deal with life have all really improved over the past several years.

When I look back on where I was, only three years ago, and I think back only a year’s time, I’m really amazed to see the difference in how I am handling my life.

I am so much:

  • better able to calm myself down and not fly off the handle over passing things.
  • more present and able to participate in life as it comes along.
  • less anxious – dramatically so.
  • better at humor than I have been in a long time.
  • more focused on what I’m supposed to be focusing on.
  • better able to pace myself and not get stuck in an infinite loop.

All of these things have taken a lot of time for me, and I am profoundly grateful for the progress in my life. I have worked my ass off, I have really pushed myself to do better, to be better, to be honest and allow myself to be humbled by my mistakes and screw-ups. I have made learning from my mistakes a top priority — and there has been no lack of opportunity to do that (fortunately or unfortunately). I have really soldiered through a lot of things that used to throw me

All these things have been central to my recovery, and now as I work my way through the tenth year of my recovery from my last TBI, I can both see and believe that so much more is possible for me. After my fall down those stairs in 2004, my “reset” button got pushed, and I was set back in my career and my relationship about 15 years. In some ways, I had to start from scratch, and I have really had to scrabble to get myself back to even close to where I was, 11 years ago.

Now I’m in that place — in my state of mind and my capabilities. And I can see so clearly now how much more I’m capable of, than I have been allowed to be by my circumstances — because people far junior to me, with far less ability and knowledge and experience, have been setting the pace and controlling the environment. In fact, the whole environment I’m working in now — in my immediate group, the larger organization, and so many of the thousands upon thousands of employees — is far less evolved and far less capable than what I was working in for the 15 years prior to my fall.

My career has been on “training wheels” for the past 7 years, actually, and it’s time to take the wheels off and move on. It’s been a long time coming, and I’ve had to put in a ton of work. But now I can see that I need to move on and get myself in a completely different space, in order to be happy and content in my work.

Now, certainly there’s the immediate environment that’s an issue. On the surface, I would welcome a change. But even more importantly, I need to change my “head space” — my attitude, my demeanor, my approach. I need to step up and really own my expertise, like never before. It’s bad enough to be surrounded by people far, far beneath my skill and experience level. But the thing that’s really done the most damage, is having succumbed to the environment and having carried myself like “one of them” for the past 3-1/2+ years.

I can do better. I can be better. And while I know that moving on from my current job is in the cards, the first step is really moving on from my current mindset, my current ways of interacting with people, my accustomed ways of carrying myself in the workplace with the people I deal with on a regular basis.

I’m better than this, and I need to act that way. I can’t let myself be dragged down by my coworkers to their level, which is embarrassing. They just don’t know how to act in professional situations.

A few examples:

We had a big Division-wide all-hands meeting that was streamed live from the home office overseas, and the Executive VP of the Division was speaking to everyone worldwide, with the camera on him. Behind the EVP, the new head of my group was sitting and talking with their counterpart in another group. Two global managers, who I would expect to behave like adults and show the EVP some respect and pay attention to what he was saying. But no, they were sniggering and whispering behind his back… as the camera recorded them rolling their eyes and giggling.

Classy, right?

Not.

Another prime example is one of my teammates who has some serious working dynamics issues with their counterparts at the home office. Those counterparts have been with the company a lot longer than they, and they also are natives to the country where the parent corporation is based. So, they clearly out-rank my US coworker, in terms of politics and connections. But my US coworker seems determined to spend all their time trying to spite and outmaneuver the folks overseas, talking about them behind their back within earshot of everyone. And what’s worse, this person puts on a good show, coming across as professional and capable, but under the facade, they’re lazy, don’t show initiative, can’t be bothered to get their hands dirty doing the drudge work that every position has, and they laugh at everyone behind their backs. They’re one way in front of others, and completely different when others aren’t looking.

The most embarrassing thing is that these two exemplars have a lot of visibility and go out of their way to carry on like they have everything squarely under control. The truth is completely opposite. They’re legends in their own minds, and they’re not paying attention to how they are truly perceived by others.

This has been bothering me for months, now — even longer. Neither of these people is someone I care to spend any time with, but I’m stuck working with them as part of my group. Plus, they’re making a ton of money, carrying on as they are, which just rakes me over coals of righteous indignation.

So, rather than let them drag me down and ruin my peace and affect how I feel and conduct myself, I need to just move out of that “space” and maintain my own level of professionalism that stands on its own.

I know that others can see what level I’m at. The fact that I’ve got a lot of very solid relationships with professionals in my organization, who are both in the States and overseas says a lot about my reputation. I’m known as someone who gets things done, and that’s a good thing.

Now I need to really embody that on a daily basis — live it, breathe it, eat-sleep-drink it, and make sure a higher level of professionalism completely permeates all my dealings with people at work. If people I work with can’t respond in kind, then I am positive that I will be able to find another situation where that kind of behavior and demeanor is appreciated and rewarded.

I know there are other places this happens — I’ve worked in them for most of the past 27 years. I’m just not in that kind of environment now.

So, I have my mission — to raise the quality of life in my daily work, to do my job in the way that I want to be doing it, and to build out my resume in ways that will “slot” me into my next position in good shape. I really do have the right stuff. I’ve got what it takes to really go far, and physically, mentally and emotionally, I’m finally in a place where I can make the most of that again.

It’s been a long time coming, that’s for sure. And I realize now that losing sight of my innate professional abilities and behavior was one of the most debilitating aspects of my TBI. I just lost it.

But now I have it back, and I’m going to take my situation to its next logical step in the progression — up, up… and ultimately away.

Onward.

It is so good to be home

Good to be home again

After more than 24 hours of go-go-going, with about an hour of sleep on the flight back home, I spent most of yesterday taking care of myself. I went out with some friends around lunch time, just to catch up, then I came home and slept. For almost 7 hours.

God, that felt good. I have been operating on 5-6 hours of sleep a night, with really long days — sometimes 15 hours of non-stop going — and it is fantastic to get to just STOP moving, and basically collapse.

I could do without losing the hour, thanks to changing our clocks, but that’s the least of my concerns, right now.

I have a big week ahead of me, with some significant projects. One of them is really behind – it’s overdue, and the folks I’m working with are just not happy about it. They haven’t been happy about things for several years, but I’m not the only one to blame. They don’t do what they say they’re going to do, on time, and then they come back to me, bitching and complaining about things not being “right”.

It’s generally unsatisfactory, and nobody is happy, but that seems to be how it always goes. Frankly, the fact that I’m able to get anything done under the conditions I’m working with, is a miracle. I have a feeling things are going to be changing soon in my life and work, so I’m not going to let it get the better of me and throw me off. These things happen. Nobody likes them. They’re awkward and uncomfortable, and they’re a pain in everyone’s ass. But that’s just how things are for the time being.

It’s all experience. Just that. Experience.

Speaking of experience, I’ve decide that whatever happens in my life, I alone am responsible for the experience I get from things. Yes, there are going to be really tough times and really easy times, too. But how I react to it, and what I get out of it, is on me. I can treat the tough times like they are victimizing me, and I am helpless to prevent them. Or I can treat them like lessons and opportunities to build up my strength and reach deeper within myself for more strength and endurance.

These past weeks – the past couple of months, actually, have been all about learning to deal with adversity and looking my imperfections and shortcomings and limitations in the eye. These are very public imperfections, which are resulting in frictions and drama with my workmates, as well as compromising my work product. In the past, I have really let that get to me, when I came up short, my focus and attention failed me, and I screwed things up.

I really beat up on myself, convinced that I was broken beyond repair, and I would never amount to anything. But that wasn’t actually accurate. Those were just times when I had the opportunity to see close up and personal just where I needed to put more attention and effort.

And when all was said and done, when I held steady and didn’t let things throw me in a hyper-personal way, what I had was a greater resilience and the ability to wade into potentially distressing situations without losing my cool.

That’s been a great boon to me, because the thing that my last TBI cost me — which also cost me my job(s) and almost killed my marriage — was my ability to stay cool. In the past, I had really banked on my ability to stay calm in the face of the storm, but after my TBI in 2004, I just lost it. I couldn’t keep anything together. I was so stressed and so fried by every danged thing, that I couldn’t make it through the day without melting down or blowing up over one thing or another.

It’s all a jumbled mass of shadowy recollections in my head, now, but I can remember a number of times when I just lost it — at work as well as at home. And I really know how that impacted me — lost jobs, friction at home, a fractured marriage and lost friendships…

Now, though, I’m getting back on my feet. I just got my tax refund back, and I also actually got a bonus this year, so things are actually looking up for me. I’m able to pay off a LOT of back debts, that have been sucking hundreds of dollars from me each month. It has taken me four years to clear out debts that were the equivalent of a year’s take-home salary. It has been a long, hard slog, but I am now making payments that will wipe out ALL my old outstanding debts, even my line of credit at the bank to cover my mortgage payments. I’m getting current on all my bills, and I’m consolidating and removing extra costs that I don’t need. I am now also in a position to do some house repairs which have been waiting about ten years — since I had my TBI in 2004, and I ceased being able to deal with, well, just about anything.

I’m in a position where I can actually fix the issues with my cars, and I’m considering getting a new (to me) car to replace my commuter car that’s nearing 150,000 miles and is starting to have the kinds of problems that older cars have. Radiator needs to be replaced. Back left strut needs to be fixed, rust around the edges, and so forth. So, if I can trade in the car I have for another one, it would probably be cheaper just to get a new-to-me car, instead of having to replace and repair so much on my current vehicle.

Having that influx of money to my bank account has just solved a whole lot of stress-inducing problems, the nicest one being that whenever I go look for another job, I don’t have to push the envelope on what I’m earning, just to get by. I’m not saddled with all these infernal debt payments, and I can actually work with what I’m making, rather than watching it trickle away.

Looking at all my numbers, I can see how I can actually get ahead in the coming months and years, which is a great feeling, after the past four years of being trapped in a cycle of debt resolution, feeling like I would never get out from under.

Yes, it is really good to be home.

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!

Guest Post: Forgiving Innuendo….

Thoughts have power

Innuendo is invisible.

Innuendo is a whisper that steals your life, purpose and meaning without your consent.

Innuendo is fear-based and subtle – it controls our lives without us knowing it.

Innuendo stifles growth, responsibility, accountability, opportunity and our integrity.

Innuendo is the illusion everyone sees – but us.

Innuendo is contagious condescension and compliance without any regrets.

Innuendo works in the shadows to rain on our parade.

Innuendo is a single minded one-way discussion without compromise or change.

Innuendo separates, divides and alienates us from each other.

Innuendo is the story everyone tells – but us.

Innuendo breeds contempt and complicates finding enough.

Innuendo creates obstacles to achieving balance and harmony in our lives.

Innuendo is in collusion with denial.

Innuendo thrives on deceit to reinforce the negative.

Innuendo is the rumor everyone hears – but us.

Innuendo eliminates potential thru stigma and stereotype.

Innuendo manipulates truth and has a language all its own.

Innuendo is a cancer in our soul.

Innuendo never forgets.

- By Ken Collins

Guest Post: Celebrating 37 Years of Brain Injury Recovery

We’re all in this together

On December 31st at 4 a.m., I celebrated 37 years of living with a brain injury. Life back to what we call “reality” has been filled with many obstacles and barriers. Some of the obstacles were placed there by me along the way as I learned – mostly through trial and error – about how I would survive over the last 35 years. Most of the barriers I deal with everyday are other people’s attitudes, prejudices and ignorance about brain injury and disability.

Living with my brain injury has given me new ways to look and deal with old issues and concerns. Many of the lessons I have learned over the last 36 years has made me a better person and as the saying goes; “what doesn’t kill you makes you stronger”.

My new life with a brain injury has given me the opportunity to meet some really incredible people with disabilities who are changing the world as we know it. Most “temporally able bodied” people don’t concern themselves about the issues people with disabilities are faced with until they become disabled – it’s a part of human nature. It’s also called hindsight instead of forethought.

Most people don’t concern themselves about disability because most of us grew up in an environment that didn’t include people with physical disabilities in wheelchairs, brain injuries or developmental disabilities, because “those” people were often segregated in “special education” and we didn’t have any contact with “them” except to be the brunt of our jokes and ridicule.

It’s not hard to hear many of these same remarks and attitudes today – MR, retard, gimp, crip, handicapped, invalid – the list goes on.

I read once that what separates “us” human beings from the rest of the other animals on our planet is our innate ability to nurture and take care of the sick and elderly amongst us. It seems to me that assisting the most vulnerable people in our society to become active participants in their communities is an honorable thing to do.

My brain injury has given me a new life and the means to help make this world a better place to live for everyone. When I help to educate business people about disability and the need to build ramps so that people in wheelchairs can enter their office building it makes it easier for everyone to enter the building and spend money.

When I talk to a business person about hiring someone with a brain injury because it would help their business – studies have shown that people with disabilities are more productive and often are better employees than their temporally able bodied counter parts. This makes my community better for everyone because it creates the situation where people on Social Security can become – tax makers instead of tax takers.

Because of my brain injury I am part of the solution and not the problem. It is honorable to help others learn ways to help themselves. It is honorable to be part of making the world a better place to live. It is honorable to make people’s lives easier and help them become productive members of their communities and take pride in myself and what I have accomplished.

- Authored by Ken Collins