The foundation of TBI (or any?) recovery

I’ve been thinking about my next steps in my TBI recovery. Logistically, I have been pretty consumed with just keeping thing together on a day-to-day basis for the past 7 years.

So much that I really took for granted had gone away — jobs, money, credit score, friends, daily routines, level-headedness, technical skills, harmony in my marriage and so many other relationships… and the loss of those basic features of my life — my foundation — left me floudering.

So, I had to really focus on the basis for a number of years:

Finding a job that suited me and keeping it.

Developing good working relationships that doubled as “friendships” (because I didn’t have the time and energy, when all was said and done, to have more friends than that).

Getting my financial affairs in order, paying down massive amounts of debt, and not getting into any more trouble with spending.

It’s been a very rough seven years — especially the past four — but I’m out on the other side, with my debts settled, my mortgage current, my credit score pretty good — almost on the verge of being excellent — and a regular job under my belt to keep my bills paid.

And I am saving up for doing some long overdue repairs to one of the bathrooms. We can’t afford to do both, but the one needs to be done, so…

Anyway, the point of all this is, looking back and what I’ve accomplished, the main thing that has carried me through all these years, has been learning to keep an even keel and not get thrown by every little thing that comes along.

For somebody like me with TBI issues and a pretty volatile temper, this has not been easy. It has taken a huge amount of work, and learning to breathe and calm down my physical system has been the lion’s share of the task. But as I look at my life of the past years from a distance, I can see how just doing that — learning to keep my system stable and not (too) reactive — has made my recovery possible.

It’s very simple, really.

When I am worked up and bent out of shape, my brain does not function well. I have a harder time learning, I have a harder time thinking, and the connections I need to create in my brain to get me back on the good foot, are being made in all the wrong places — if they’re getting made at all.

But when I can stay calm and not get caught up in the storms of life, then my brain has the chance to make the right connections in the right way, and “re-learn” how it’s supposed to do things.

Of course, knowing this and doing it are two completely different things.

Yesterday morning, when my parents were here, I was starting to feel really down on myself, stupid, useless, and overwhelmed. Whenever I am around my parents, I feel that way, because both of them are very heady and intellectual, and in a lot of our conversations, I feel like I’m barely keeping up. They do try to be kind — nowadays… it wasn’t always the case — but I really feel stupid sometimes, when I am with them.

I started to cry because I felt so stupid and so bad. Broken. Displaced. Useless. But then I stopped myself from the downward spiral, and kept repeating to myself, “I am smart in other ways. I am smart in other ways.” I just kept telling myself that, over and over again, and before long, I wasn’t in that dark hole anymore, and I could think clearly again.

And I had another good couple of hours with them before they took off for home.

Being able to talk myself away from that edge, and getting my system calmed down, was the key. It usually is. And looking back on the past seven years, I can see how much it has cost me, when I was not keeping a good handle on my “internal state”.

So, there it is — the foundation of my recovery from TBI has been keeping in state of mind steady and learning how to not let things get hold of me and carry me away.

When I am stable and present and I am not being pushed about by every last wind, my brain has a chance to make good connections that give me a solid bedrock to build the rest of my life on. It takes time, of course, and there are times when I slide back and have to make up lost ground, but that’s how it is with everything. There is no such thing as a straight line in life, as well as brain injury recovery.

You just have to keep going. You just have to keep moving and learning, keeping a level head and not getting derailed by little things that come along.

Speaking of not getting derailed by little things that come along…. I’ve got to go off to work in a little bit, and I’ll be dealing with my boss again, who tends to be petty and divisive and plays all sorts of mind games. They’re not nearly as smart as they think they are, but I still have to keep my wits about me, when they are up to their tricks.

So, that being said, I’ll practice my steady breathing again today, hopefully get a break in the afternoon, and just keep keepin’ on.

Life is waiting. Onward.

 

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 >>

TBI Lifehacks – My ticket back to health, wealth, and success

Once you know how things work, you can come up with new solutions

So, life is becoming pretty awesome for me, I have to say. There are a lot of challenges in my life, still, but working so hard to overcome all the craziness from the past ten years is really starting to pay off.

I find out next week if I get a raise. If I do, it will be a big friggin’ deal, because although I did get a slight increase in pay last year, this year is different, because it’s not all going back into paying off debts. This year, it’s an actual raise, because it’s coming to me, instead of creditors.

I have successfully wiped out about a year’s salary worth of outstanding debts, and that’s not a small thing. It’s taken me four years to do it, but I finally made it.

I made it. And now I can truly have take-home pay, instead of being a way station for money that comes from my employer and goes directly to someone else.

So, if I get a raise, then so much the better. Heaven knows, I’ve worked for it.

God, have I worked for it. My life has been pretty much centered around my recovery from multiple TBIs, ever since I realized back in 2007 that this was going on with me. I happened up on information about mild traumatic brain injury almost by chance — I was taking care of a loved-one who’d had several strokes, and I was researching the brain and brain injury. And as I read about brain injury, I looked at my own life, and I realized that it all sounded eerily familiar. And I realized that despite cashing out of a good job a few years before, and getting two years’ worth of salary from stock options, I was nearly broke. And I realized I didn’t know why.

Suddenly so much made sense.

So, I have dedicated my life to learning as much as I can about my own particular situation and finding ways to approach and address it that will lead to greater health and balance. Wealth and success are welcome, too… especially since I was somewhat wealthy and very successful before I fell in 2004.

A lot has changed, and a lot has improved dramatically over the past 7 years, since I first embarked on this quest. And looking back on my life and my activities, I realize now that what I’ve been doing is what you could call “life hacking” — finding”an inelegant but effective solution to a specific problem in [everyday] life.” (See the Wikipedia explanation of life hacking here)

Life hacking refers to any productivity trick, shortcut, skill, or novelty method to increase productivity and efficiency, in all walks of life; in other words, anything that solves an everyday problem of a person in a clever or non-obvious way.

This is essentially what I’ve been doing for the past 7 years. “Hacking” as most people understand it, is a bad thing that breaks systems and lets criminals do bad things. But hacking is really about understanding a system, how it works, how it’s put together, and then based on that understanding, coming up with an unorthodox solution to problems that arise.

If you look at the Lifehacker web site or instructables.com you’ll find a ton of tips and tricks and approaches to things in everyday life that are not only cool, but also time- and money-saving, which is the whole point. People are figuring out everything from using voice recognition to write software code more efficiently, to putting handles on your grill, so you can add charcoal more easily. It’s all about making life better, by doing things a little differently… because you understand how the system works, and you can bend the rules here and there to take advantage of certain aspects of the system that other people take for granted as set in stone.

Few things are as set in stone as many people believe, and that especially goes for the brain. It’s an amazingly complex system, and it varies from person to person (as does TBI), so there are countless ways to improvise and innovate, once you know the underlying principles behind it.

You don’t have to be a rocket scientist (or a brain surgeon) to address TBI from a hacker standpoint. You just need to know some fundamental principles, be willing to experiment and try new things, you have to be willing to pay attention to what you’re doing and what happens as a result, and you have to be brutally honest with yourself about what’s really going on with you.

You’ve got to be both awed by the vastness of the interconnected system inside your head, and also be a bit of a heretic who’s willing to push the envelope with what’s “possible”.

The things that have been the basis for my own recovery have been:

  1. Understanding that the brain is indeed “plastic” — that is, it changes in response to input and experience. Any kind of learning is an example in plasticity, as are the changes that people go through in the course of their lives.
  2. Believing that by trial and error, I can find the best way to live my life — and also change my brain. It’s fine to read books about how others do it, but there’s nothing like real life experience to make it real — and make real progress.
  3. Re-defining “mistakes” as opportunities to learn and change and grow, and not shying away from making as many mistakes as possible.
  4. Believing that nobody can know better than I, what works best for me and my brain. I can listen to what others say and try out what they suggest, but nobody knows better than I, what really works best. Things that look great on paper and have a good success rate in formal circumstances, can turn out to be useless — or even harmful — for me.
  5. Trying… and trying again.

Observing has been a huge part of my recovery. Observing and adjusting. When I came across the Give Back TBI Self-Therapy Guide and started working with the principles, it really made a lot of sense. And best of all, it turned out to really work well for me. Some of the suggestions aren’t so great for me, but the fundamental underlying principles are sound, in my experience, and they’ve been hugely helpful for me.

Also a big part of my recovery has been sharing my experiences with others — here on this blog, and also with a neuropsych, whom I’ve been meeting with on a regular basis since 2008 or so. Just the process of sitting and talking with another human being who doesn’t judge me, who doesn’t make fun of me, who doesn’t roll their eyes and dismiss me… My neuropsych is the only person in my life who lets me just work through what I need to work through, without either jumping in and trying to save me from myself, or judging me and pushing me away.

They also have the same orientation as I — that change is possible, even inevitable, so why not make the most of it and really step up and take charge of the change.

Also writing on this blog and checking in regularly, has been a huge help. It just gets me out of my head, and every now and then a reader provides some support — either encouragement or a much-needed reality check about me feeling sorry for myself or being a whiner or some other valuable critique that gets me to stop and check my head, and adjust my approach in some way.

So yeah — hacking TBI. This is what I’ve been up to. Hacking, in the sense of

  • Identifying problems I need to solve — sleep/fatigue issues, anger issues, mood issues, sensory issues, attention/distraction issues, pain issues, relationship issues
  • Learning about the systems where the problems occur, inside my head — and whole body in fact… central nervous system, enteric nervous system, autonomic nervous system… lymphatic system… senses, impulses, instincts…
  • Letting the knowledge sink in, so it made sense to me and I could work with it.
  • Figuring out how I can tweak the system(s) to fix the problems — how I can do things a little differently, or take advantages of one of my systems to offset problems in another one.

A classic example of a TBI Hack that worked like magic was this:

Problem: Exploding with anger each morning when I would wake up and try to make breakfast, and I would drop things. I would explode with frustration when something simple would happen — like dropping a spoon or losing my grip on my coffee cup handle. My explosions were more internal than external (though I have been known to throw things, before I get my coffee in the morning). But they still tore the crap out of me, first thing in the morning. That’s a hell of a way to start the day.

System Issues: I learned that one of the after-effects of mild TBI is a change in “tonic arousal” — or general level of wakefulness in my brain. When I have low “tonic arousal” — my brain is slower to respond to things around me, because it’s less “awake”. When it’s less awake — especially in the morning before I have my coffee and get going — it’s more irritable and more reactive, and it’s harder for me to manage my moods. So, when I am waking up in the morning, I am naturally more inclined than most people to be grumpy, and to fly off the handle at little things.

Letting It All Sink In: Just knowing that it’s my injured/rewired brain — not some character defect — that’s making me more prone to fly off the handle, has been a huge weight off my shoulders. For the longest time, I thought it was a problem with ME. I thought that Icouldn’t handle sh*t. Icouldn’t figure out how to keep an even keel over such small little things as dropping a spoon or losing my grip on my coffee cup.

Tweaks and Fixes: As it turns out, just knowing that it was my injured brain, not my personal character, that was giving me problems helped me to better manage my state in the mornings. I would still lose my grip on things and still drop things, now and then, but when I did, I wouldn’t fly off the handle and explode, internally and externally. I would take a deep breath, let the the flood of anger and frustration wash out of me like a receding wave, and I would try again.

I found that being aware of my state of wakefulness let me make better choices about what to do. I slowed down, for one. I quit rushing around like a crazy person, first thing in the morning.

I discovered, too, that when I treated the situation like the challenge that it was — getting my breakfast without blowing up — and I applied effort to my morning routine, it made me more alert. The Give Back program says this — you have to realize that TBI recovery takes effort, and you have to apply yourself, not assume everything is going to work like it did before. Fairly recent research (2010) Perceived mental effort correlates with changes in tonic arousal during attentional tasks, says exactly that — when you perceive that you have to work harder at something, it increases your tonic arousal — and that’s exactly what I wanted to achieve.

I also came up with a checklist and a plan for how to do things. I didn’t take anything for granted, because, well, I couldn’t. I would forget things all the time, and it was very dispiriting. My checklist approach, listing each thing I needed to do, in its specific order was admittedly rudimentary and probably looked fairly remedial (well, it was, in the sense that it helped me remedy my situation), but it worked for me.  I stuck with my checklists for quite some time — probably at least a year. Maybe two. Until I didn’t need them anymore.

Bit by bit, I practiced and tweaked my morning routine so that eventually I could get through the morning without a blow-up inside my head.

This would have been impossible without the underlying knowledge about the systems at play. I had to understand the system, in order to tweak it.

And I had to understand there was a problem that needed to be solved.

So, as I approach the 10th anniversary of my latest TBI, this coming Thanksgiving, I think about how much things have changed for me — in difficult and good ways. All in all, the challenges I’ve faced have made me stronger and smarter in new and different ways. There are some things I’ve had to let go of — all the crazy busy-ness, for one, as well as going without sleep and driving myself from one project to the next. I’ve also parted ways with a lot of people. But those sacrifices have given me more rewards than cost, so it’s all been so worth it.

Sure, I would like to have never had to deal with this TBI stuff. But it’s been a fact of life for me, since I was a little kid. Better to deal with it.

And what better way to do it, than hacking into it, taking my life apart, and then putting it back together in all new ways?

The sun is up, and it’s looking like a beautiful day.

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…

Thank God it’s not Monday anymore

I don’t know what was up, yesterday. It was a really crappy Monday. Too much happening, too many things up in the air, and too little resolution. A long-time “friend” at work has apparently been gunning for my job behind my back, talking trash about me and really being a pain in the ass, and a bunch of us, including top managers, had to gather to get them in line.

It’s depressing. I know they are just trying to solidify their job prospects, but it feels like a betrayal of sorts. I’m not taking it personally — the real issue is that the role that I am playing in the organization has never been clearly communicated by management outside my group, so I have run up against all sorts of resistance from people like this (ex)friend.

I would like to consider them a friend, still, but I think we’re past that, now.

Anyway, so it goes in large organizations where everyone feels like their lives are not their own, and they’re at the mercy of politics and what-not.

The real issue is management, in particular the person that I’m reporting to. They have a flair for drama, and they love to stir things up and cause a fuss, then step in and “fix” it all. Nice. It’s one way to do things.

As for me, I started out with the best of intentions yesterday, but I ended up mired in all sorts of extraneous drama, and then I had to leave the office early to get to my acupuncture appointment. I’ve been seeing an acupuncturist each Monday evening after work for three weeks, now, and it has dramatically improved my headaches. I’m actually getting some relief. If nothing else, I get to lie down on a warm table and rest for an hour without distractions or people pulling on me.

The needles seem to be helping a lot, too. My body is definitely reacting to them. Sometimes, when they’re put in place, my stomach starts to rumble. Or I feel an electric tingling warmth start in my hands and spread through my whole body. It has really helped my carpal tunnel, that’s for sure.

So, it’s not Monday anymore. The day was both interminably long and impossibly short. I have a lot to do, and it’s kind of demoralizing, to never get anything done the way I’d like. It’s not that I’m a perfectionist — I just really need to get things done in a way that will keep them from breaking later on, and that’s not possible in the company where I’m working. It’s the culture — just get it out there, and worry about fixing stuff later.

The company I work for is a software/services company that has a long-standing reputation for shipping products that are not 100% finished. They get it just stable enough to send out there, then they sign people up for subscription so they will get patches and fixes later on. If you don’t sign up for subscription, you’re SOL, and you have to muddle along with a program that does most of what you want it to do, mostly right — but not 100%. They figure it’s good enough, so just get it out there and be first to market.

This mindset reaches beyond their R&D department. It reaches throughout the whole organization. It’s really the way they work — just get things done “good enough” and worry about the details later. Things can be fixed later on, they tell me — everybody tells me. But then who has to fix them? Either the people who are willing to take on the extra work… or the people who cannot survive without having things work 100% properly, all of the time.

That’s where I come in.

I dunno. Maybe it’s just how things are done, these days — launching products in “beta” and then letting the customers be the final testers and fixing things after the fact… constantly interrupting everyone around you, to get things done, without regard for their concentration or other priorities… not ever really doing your part completely, but always throwing things over the fence to someone else to handle it…

But that’s not how I want to do things, and I really need to get back to an environment where the time and resources and people are really committed to doing an excellent job every single time. I used to work with people like that. Used to…

For now, though, I’m not there just yet. I’m bone-tired, and I’m beyond frustrated with so much, but I’ve got my priorities pretty straight, and I’m making some important choices about what to do with myself. I’ve had a couple of big projects that have been weighing heavily on my mind, and I’ve decided what to do about them.

One of them has really been on my mind, because it’s BIG, and it has the potential to not only make me a ton of money — but completely take over my life for years. That is not what I want. I don’t want to wade into the swamps of lawyers and accountants and regulations and tax collection, and all that crazy mess. I just don’t have the bandwidth for it. I would have to keep that running at the same time as my regular job, and it’s just not possible.

I do feel a little disappointed that I am not following through. This Sunday is the deadline for filing the papers to keep it alive, but the thought of having to do everything around it, is just, well, daunting. I may not give up on it completely, scale back my involvement in it, and do part of what I had originally planned. But the scope that I originally wanted to do — start a whole company, create jobs, develop an empire… yeah, that’s not happening.

I need to rest.

The past year — and prior — I’ve been pushing myself with a number of projects. Part of the motivation had to do with just getting out of debt and getting back on my feet. Getting my life back. I was so driven, because I was in such a deep hole. But now, thanks to tax returns and a bonus at work, I’m out of that hole. I’m not ahead of the game, but I’m also not playing catch-up.

And that makes all the difference.

So, the pressure to drive-drive-DRIVE is off. I can breathe again. And being able to breathe has really changed my priorities and where I see myself putting my focus and attention in the coming months and years.

I don’t have to make myself nuts, just trying to make ends meet. I don’t have to go to all sorts of extra lengths to push above and beyond. I know who I am, and I know what my priorities are, and for me it’s now about just maintaining some balance, getting enough good rest, and recovering from the past years of super intense stress and strain.

I tend to underestimate the pounding I take, but I have been pretty roughed up, over the past ten years. Now I am coming out of a pretty dark hole, filling in the divots and potholes and gashes that drama and emergencies have put in my life, and just getting ready to move on to what’s next — what I need, as well as what others need from me.

What’s next…?

Onward

 

 

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