Taking it all in

When the fruit is ripe - pick it... and enjoy
When the fruit is ripe – pick it… and enjoy

Constantly striving and struggling takes a toll. It takes an enormous toll, in terms of energy and insight and being able to enjoy your life. When you’re constantly GO-ing, when you’re focused on being active and reactive and pro-active, you lose sight of the good that you can let in.

Sometimes you lose the ability to let it all in. There’s a lot of good in the world, but we can be so busy fighting and pushing, that we’ve got nothing left for just sitting back and letting the good things be good — and enjoying the fruits of our labors. It’s no fun, being literally unable to reap what you’ve sown.

It’s like being a farmer in a country that never has a summer or fall. It’s work-work-work, year-round, without any hope of harvest. I used to know a farmer who lived in a northern area that had something like three months of growing season.  There was snow on the ground from September till May, and then the ground had to thaw. He was not a happy farmer. He was exhausted. Eventually, his barn burned, and he had to move.

I’m a bit like that farmer — but sort of by my own making. I have been pushing and striving and struggling for such a long time. Damage control. Chasing my dreams. Making the products of my imagination become real. And all that pushing has seriously worn me down… to the point where some days I can’t see the point of anything, anymore.

Then something occurred to me yesterday, when I was feeling down and blah:

I am actually living my dream.

See, when I was a kid, all I wanted to do, was be a writer. I wanted to write things that were helpful to others and provided insight into everyday life. I also wanted to be free of editorial control, so others would not tell me what to write, what to say (or not say), and I could do so on my own terms.

My goal for many, many years, was to become a freelance writer. And for a while I was doing that. But I ran up against problems with editors and schedules, and I could never seem to finish a job properly. Whether it was a freelance editing job, or it was technical writing, I was just not good at being independent and keeping it together.

I wanted to be independent. How I wanted that! And for a while, I was. On and off, I have “done my independent thing” and taken contract jobs, while managing freelance projects on the side. That’s what people did in my world of technology. And that’s what I did, too.

But it was always a struggle. And my writing wasn’t helped by the pressure to make ends meet.

For so many years, I felt like a permanent job was a millstone around my neck, that I was going to be pulled down by companies that didn’t know how to run themselves. That was actually the case for years, because I worked at companies that just couldn’t seem to figure it out. Now those companies no longer exist.

And for some reason, I thought that ALL companies were like that. Because that’s all I’d ever known.

So, for a long, long time, it was a double-whammy of pressure to make ends meet with companies that couldn’t keep their act together, the pressure to make it on my own — on m own terms — and the struggle to find the time and opportunity to write. I have written almost daily for decades, now, and it’s the one constant in my life. So, dealing with the pressures at work and all the existential difficulties that go with trying to make ends meet, keeping the dream of writing alive was pretty much a challenge.

It’s not that I couldn’t write. It just didn’t feel like I was a writer. It felt more like a task, than an art, and I lost touch with so much insight, over the years, because I was so stressed. If it wasn’t problems at work, it was  problems after another concussion — and the two fed each other, actually. I didn’t have the same sense of writing that I’d had in my 20s, before I had the mortgage and disabled spouse to provide for. It was nowhere to be found, and I thought the only way to get out of that was to get going on my own terms and live the dream of total, complete independence.

Well, now things are very different. And although the company I’m working for now is going through its own reorganization (who isn’t?), and my job and position may be very different in another 6 months, I feel more independent than ever before. It’s not so much the company, as it is my position. The job I have now is truly on par with the work I’ve done in the past, which is nothing short of amazing. I thought that sort of position would never come ’round again. I thought I was toast. But now I know I’m not, and I have the opportunity to focus on a whole new type of work that demands expertise and skill in much the same way that my programming did in the past.

And the best part is, while I am bone tired by the end of the day, it’s a good tired, and while it does wear me out, it also energizes me and gives me real hope for my future.

Plus, I can write again. I mean, I have been writing — a lot — for a number of years on this blog. And there’s no lack of projects I have in various stages of completion. But now it actually feels like I’m writing. It’s actually sinking in.

It’s important to let it all in, if only every now and then. It’s the thing that lets us see that all we’ve been working for, is actually paying off. That there is something to show for our efforts.

It’s important to let that happen.

So our world can open up again, and we can know that all is not in vain.

Just keep your spirits up

Create something to believe in!

I woke up this morning having the keen sense that over the course of my life, I’ve come through a huge number of obstacles. Emotional swamps, mental jungles, physical minefields, and logistical nightmares.

I’ve been on the wrong side of the law, and I’ve been on the receiving end of foolishness at that hands of those who have been far outside their rights.

I’ve been up, I’ve been down, I’ve traveled my own path, and now I find myself actually doing better for myself… happier, healthier, more content, more optimistic… than most of my peers. I also have a much more engaged and involved relationship with my life and everything in it, than 90% of the people I know.

Despite the pain and suffering — some of which may never actually go away at all — I am here, and I’m in a very good space.

What’s the secret?

Keep your spirits up. Do whatever you need to do, to keep your mind and spirit alive and involved. Keep your body in good condition and don’t abuse it with bad food, drugs, too much drink… too much anything. But most of all, keep your spirits up.

Someone once told me that my journal writing over the years was a “Proustian” waste of time — a lot of navel-gazing that provided no apparent benefit. Likewise, I have launched many, many projects which ultimately came to naught. For years, I felt like I was a failure because I could not “make it happen” for myself, and I struggled constantly with so much. I thought for sure that if I did things the right way, I would eventually be rid of the pain, the suffering, the hardship, the challenges.

And my life would get better.

Now I realize that even though all the pain, suffering, hardships, and challenges are still around, the thing that has really changed is me. I have acquired the skills I need to meet the hardships that come from TBI … and to figure things out as I go. I am still learning — and each day offers me one more way to make right the things that are wrong in my life. I didn’t get here by accident. I got here by keeping my spirits up, by staying interested in life, by always having some activity going on that keeps me intrigued and engaged.

Even if I don’t “make it” with my projects and end up rich and famous, the simple fact of the matter is that it keeps my mind fully occupied, and it keeps me from sitting around feeling sorry for myself. I come up with some crazy concepts, too — many of them far beyond the scope of my actual interests and abilities. But I dream big, and I chase after those dreams as if they truly will come true.

When they don’t… and they often don’t… well, that’s not the point. The point is that I have been engaged on a very high level, and my energy has been good, and it has kept me from being my own worst enemy. Maybe someday some of my grand plans will pan out. But the main thing is the working towards them, and keeping my spirits high in the meantime.

Most of the things I dream of, I don’t tell anyone about, because they’re really just for me, to keep me going — and when others get involved, they tend to dilute the process and hold my mind and heart back.

To each and every one of you reading this right now, I encourage you to pick something big and crazy to dream, and keep that dream alive in your mind. Pick something that would give you so much pride to accomplish, and then secretly set about making that dream come true. Don’t tell anyone else about it — just figure it out for yourself, dream it big in your heart, and let that carry you through your days.

Any kind of recovery — whether it’s TBI or not — requires a huge amount of energy and stamina. I can take a monumental effort each day, just to keep going. So, find something to spark your spirit, then dwell on that, feed on it, let it bring you joy and happiness and encouragement, and stick with it like your life depends on it.

Because maybe it does.

Onward.

If you never stop, you never fail

It actually comes in handy

So, I’ve had a lot to think about, the past week. The job is weird, the projects I’m working on are taking turns in unexpected directions, and every time I turn around, there’s something else to do and get done. My to-do list is a many-headed hydra. No sooner do I check off one thing, than a bunch of other things pop up that need to be tended to.

I want to just quit. I want to get in my car and start driving. I could go to Canada. Or I could go to Mexico. My passport is up to date. Hell, I could even go to the airport and find a standby flight to get me out of here. I don’t have a lot of money, but I’m sure I could figure something out. Even if I just go away for a weekend… Actually, that’s an idea. My spouse is going away next weekend on a business trip, so I could coordinate that and take 3 days to myself, somewhere else.

I wouldn’t even need to fly. I could drive. Of course, then there’s the gas… but anyway, I’m sure I could figure something out.

Not that this is going to happen. Next weekend are my three days to do some project work that involves a lot of drilling and hammering and painting. If I skip town, I lose three extremely valuable days of time that’s 100% uninterrupted by someone who is sensitive to noise, dust, and the smell of paint. It’s a window of opportunity that I’m really looking forward to. So no, I won’t be driving to Canada. Or Mexico. Or flying to London for the weekend.

I’m staying home and doing smart things, taking steps, one at a time, to get where I’m going.

I’m going to keep going.

I’m not going to quit. I’m not going to flee from things — I’m going to flee TO them. Rather than bagging it and ditching the whole lot of people who are either not supporting me or getting in my way, I’m going to hang tough and stay steady and find other and new ways to move forward the way I see fit.

I’ve had a lot of opportunity to contemplate this, this past week. I had big plans for one of my projects, and by this time, things were supposed to be crazy-busy, with money and other support rolling in, and my phone ringing off the hook. That’s what happened a number of years back, when I announced another one of my projects — the response was so crazy and overwhelming, I was swamped by the feedback and I kind of lost it (that was within a year after my last TBI, before I realized what was going on with me and how badly I’d been hurt). I was a victim of my own success, and I was fully expecting something similar to happen this time.

This new project is a lot more interesting (and fun) than that prior one was, so I had every expectation that this would make waves. My current announcements to friends, family, and the press (aka marketing push) were supposed to make a big splash and get people all excited about what I’m doing. But it just didn’t work out that way. Not in the least. Everybody looked at what I announced and said, “Cool!” and went back to what they were doing before. So much for that big idea.

In a certain light, you could certainly say that the Big Announcement was a failure. It did not produce the results I was hoping for – not even close. It has gotten some attention, here and there, but not on the scale I expected. And in the back of my mind, I’ve had this big neon FAIL! sign blinking in bright colors that light up the night sky. Seriously, it’s been waking me up at 2 a.m. in a cold sweat, and I’ve felt like a blithering idiot for thinking this could work. I want to don a disguise with a beard and glasses and head for the border, incognito.

But let’s not be silly here. This is but one step in a direction I am going, and the things I’m learning now are going to be incredibly useful later on. Plus, my whole existence doesn’t hinge on the success of this one announcement. If anything, my existence (and the success of this project) actually hinges on DOING, not discussing. People want to know when the project is done, not when I’ve started it. They want to know when I’ve got something final for them to get. Not what fantastic ideas I have about how to make that happen. And frankly, I don’t blame them. I’m the same way, myself. I need to see something concrete and finalized, not a work in progress. I’m a busy person, and like so many others, I have my own concerns and projects to think about.

In retrospect from a certain angle, I could have predicted this — my project is a work in progress, and the people I made the announcement to are mainly interested in finished projects.  But at least I tried. At least I put it out there. ‘Cause there’s always a chance that I’m wrong about my suppositions. And it could have just as easily have gone “my way” — if I’d never put it out there, I never would have found out.

The bright neon blinking FAIL sign has gotten progressively dimmer over the past days, almost to the point where it’s gone away. The important thing is that I’ve tried. I’ve given it my best shot, and I put it out there. And the things I’m learning from this are really going to pay off in the future.

And when I think about it, I realize that if I just keep going, there can be no failure. Ever. It’s all just experience. It’s all just lessons to learn, and I’ll be able to use each and every thing I learn in the future. Learning hard lessons is the toughest thing about succeeding. You sometimes have to go through so much to get where you’re going, and not everyone can keep going under those circumstances.The only thing that’s happened, is my attempt didn’t have the results I was expecting. I didn’t “fail” — I tried something and found out my expectations were not met, and I realized there were some things I overlooked. There’s no crime in that. The real crime would be not even trying at all.

So, rather than feeling down on myself for things not turning out like I had planned and hoped, I’m feeling pretty good that I put myself out there and went through the steps of making the announcement. I’m learning a whole lot as I go, and it’s all going to be fodder for me later on. That knowledge is going to be priceless. And it’s well worth a little disappointment and surprise along the way.

Heck, if I want to get in my car and drive far, far away, I can take the long way to the hardware store.

There will always be walls… and reasons… and more

What's stopping you?

“My name is Daniel Ilabaca. I used to have nightmares. I used to be angry. I used to try to run through walls. I used to battle with my obstacles. I used to try to fight with my fears. It used to make me tired. But I found a better way. I knew there would always be another wall and another place to fall. I learned to use my obstacles. I learned to go over them. And around them. Now I am free of my fears. Now I am awake. Now I am happy. My name is Daniel Ilabaca. And I live what I dream.”

Just got done watching this: http://video.google.com/videoplay?docid=6549235439965926929#

You should watch it, too. Don’t try it at home (unless you’ve been training like a beast for a very long time), but watch it.

I’m a little sore today. Changed up my workouts. Pushing myself harder, doing the kinds of movements that actually have something to do with my life.

It’s more than about getting in decent physical condition, losing the winter weight, getting rid of the extra pounds. It’s about stamina. Strength. Being able to go higher and do more and not getting worn out in the process.

I’ve noticed that I do much better, overall, when I am in good physical condition. TBI can screw up your metabolic system — how your body creates and manages energy. It can also make you tired more quickly, and tiredness can lead to agitation as well as a host of cognitive and behavioral issues. I find that when I’m tired, I get angry quicker, I do stupid things more, I say things I don’t mean to say. Things fall apart more, and I react more strongly to them.

Things rapidly fall out of perspective, when I am tired.

So, I’m working on my stamina, which really depends on my strength. Physical strength. The ability to sustain physical activity without running out of steam. If I have more physical strength — and flexibility — I have more reserves to draw from. I can do the simple things for longer, without getting thrashed. And that means I can postpone the meltdown — or avoid it entirely — better than when I am out of shape and do not have the energy and strength to go on.

Make no mistake — brain injury, even mild, does a number on you. And the mild stuff is even more pernicious, because it’s not obvious, but it takes an internal toll that over the long term can be VERY difficult to navigate and negotiate.

So, if I build up my strength and flexibility — take good care of my body overall — it gives me the ability to do things more easily in my everyday life. And I feel better about myself, being in decent condition. Able to lift myself up. Better able to support myself, literally as well as figuratively. And balance. It lets me balance.

Oh yes — BALANCE — that’s gotten a whole hell of a lot better. I used to have to hold onto the handle of the oven in the kitchen, when I did my leg lifts. Now I can stand and balance without needing to hold on. And I can even stand on one leg, arms outstretched, and do my leg lifts — front, back, and side — and not fall over.

This is big. Because balance has been such a challenge for me over the years, and few things set me off more than being off balance. It’s exhausting. But with more strength, more core strength, especially, I can balance and I have more of a foundation to rely on, so even when I am having trouble with my ears, my legs and core can compensate for it. And I don’t need to fall over.

See, here’s the thing – no matter what, there will always be walls. There will always be obstacles. There will always be something getting in the way. Whether it’s TBI or mTBI or concussion or constant pain or vertigo or tactile defensiveness or headaches or mental fogginess… there will always be something that gets in the way. But I don’t have to let that stop me.

Watch parkour on YouTube for a few hours, and then tell me the usual obstacles need to always get in the way. The point of watching this is NOT to go out and do it. I don’t have anywhere near the physical strength to pull this stuff off, and I really can’t take the chance of more concussions, from jumping from high places and climbing up walls. The point of watching this IS to see how others negotiate obstacles in their own individual ways and truly defy common “wisdom” saying that such things are not possible.

It is possible, and with the proper training and dedication and mindset, it IS possible. They even make it look easy.

In much the same sense, I see no reason why those of us who battle these complications of concussion and TBI shouldn’t find our own way of overcoming the obstacles that get in our way. The obstacles could be as mundane as going to the grocery store, or as overwhelming as taking on a new job or a new career, or navigating the hazardous waters of human relationship.

With the proper training, consistent discipline and practice, and true commitment to living the best life possible, who knows what else could happen in your own life? I’m still working on figuring out what else can happen in my own.

Care to join in?

Most of us live too small

Facing up to it

In the midst of all the everyday chores… in the midst of trying to keep myself on track, in the midst of a seemingly endless stream of little annoyances and oversights (a check to one of my creditors was returned to me, because I forgot – of all things – to write out the amount on the line, and I just wrote in the number amount)… I often wonder how things might be, if I weren’t constantly waylaid by these stupid little things.

The thing about the stupid little things is, the sheer number of them make me think that I can’t handle the bigger things. If I have trouble handling something as simple as writing out a check (I’ve never had that problem before, that I can remember), what does that mean for my overall competence?

All the little things start to look that much bigger. And the really big things start to look absolutely overwhelming. Stuff that people do every day, as a matter of course — get up and go to work, participate in the world, and just live their lives — starts to look enormous and intimidating, and here I am — little ole me, who can’t even write out a check properly — what good am I?

But thinking about this, it just doesn’t sit right with me. One oversight shouldn’t completely wreck me. One stupid blip on my radar shouldn’t define my whole day, my whole week, my whole life. And if I let this one thing stop me, if I let all the hundreds of other little things stop me, then what kind of life is that?

Seriously.  I do this all the time, unfortunately. And so do lots of people I know. They think that because they don’t know how to do something now, they’ll never learn. Or they think that if something doesn’t come immediately easily to them, they’ll never get it, or they’ll never be able to do it and enjoy it. They think that they’re too damaged, too wounded, too impaired, too ugly, too short, too stupid, too ignorant, too inexperienced, too young, too old, too injured, too inexperienced, too _[insert reason here]_.

Sometimes they’re making excuses to get themselves off the hook, so they don’t have to extend themselves. Other times, they’re genuinely skeptical of their own abilities and potential. They think that their past determines their future, and that if they don’t know everything they need to know by now, they never will. And all that remains for them to do, is make themselves as comfortable as possible while they wait to get old and die.

Sad. And completely unnecessary. Because life holds a LOT more for us, than just that. And we’ll never know what else is out there, what else is possible, until we get up and go out and find out what else is waiting.

Okay, so there are complications. Sustaining multiple mild traumatic brain injuries hasn’t done much for my ability to deal with fatigue or uncertainty. It tweaks my anxiety and makes me VERY agitated and anxious over the littlest things. It makes my hearing acutely painful at times, as well as my eyesight and sense of touch. And the balance problems don’t help, either.

But you know what? That’s not all there is to me. There’s a whole lot more to my life, and — what the hell — I can always work around the issues I have. Like make sure I get enough sleep, or at least don’t push myself to do stupid things when I’m over-tired. Like wear sunglasses and watch my moods. Like take time-outs, if I need to.

Most of all, what I need to do is just keep going. Not let my”issues” become the defining elements of my life. I need to get enough of a structure to my life to handle all these little logistics things, that I can focus on the big picture — the direction I’m going with my life, what I’m creating with my life. What I’m meant to DO. Not what I’m meant to endure.

What if there were more to life, than “coming to terms with my limitations” and “accepting the new me” that’s a poor imitation of what I used to be? And what if the monsters that are keeping me from doing what I love to do were not nearly as horrible as my mind makes them out to be?

What if nobody noticed that I totally screwed things up and said things that were lame and strange? Even if they did notice, what if nobody CARED? What if  the rest of the world were so self-absorbed and caught up in their own stuff, that they never noticed the “horrible” things I imagine I’ve done and said?

I know I’m not alone in my conviction that there is something wrong with me. Most of us feel that way, to some extent. And I know I’m not the only one who has let their life be too small, because of what’s happened before, and what I think has become of me.

But if I live right and use my head properly, the world will have one less person living too small.

Working TBI issues one at a time

Traumatic Brain Injury issues do not have to sideline you and disqualify you from a productive and satisfying life. There is a way to address your own particular issues, even if your issues are unlike those you hear others talking about. Despite multiple TBIs, starting in early childhood, I have been dealing with recurring concussion/head injury issues regularly and very successfully for years. I have not received any formal rehabilitation, until about a year ago. It’s helping immensely, but I wasn’t “dead in the water” before I connected with my neuropsych. Through trial and error and a whole lot of hard work and practice, I’ve figured out how to make it in the world, TBIs and all.

For me, successful recovery is more about your method and techniques, than it is about treating a specific symptom. Everybody’s symptoms are different. What we have in common is the nature of our injuries — our brains have been hurt, and they don’t behave the way they used to, anymore. It’s confusing and frustrating and overwhelming, and it is really tempting to give up.

A lot of time, I hear people who have been affected by TBI (both survivors and friends/family members) say that when it comes to dealing with TBI, they just don’t know where to start. So, they settle for less of a life than they should/could have.

It’s true – it is hard to know where to start. The brain affects every single aspect of our experience, cognitively, behaviorally, physically… you name it, the brain is involved. And when the brain is injured, then you’ve got problems.

Without a doubt.

What I have found particularly helpful is a daily practice that is sort of along the lines of Give Back Orlando’s approach. It’s not always easy, and it can be time-consuming, but without it, I’d be sunk. Here’s how I handle my issues and manage my life:

  1. Each day, I write down the things I want to accomplish. The things I want to do. The things that will make my life worth living. I write it all down in a list format on the blank side of a piece of 8-1/2×11 scrap paper (I’ve got tons of that), and I put checkboxes beside each item. I also write down the times I want to get them done, if time is important (like an appointment or a deadline). I mark the most important ones with yellow highlighter, so I don’t miss them.
  2. I take this list with me as I go through my day. I use it to keep myself on track and remember what I am supposed to be doing.
  3. If/when I accomplish something, I put a check-mark in the checkbox I drew beside the item and I make a note about why it worked out (like “I was focused” or “I HAD to get this done”).
  4. If I did not accomplish something on my list, or it got totally screwed up, I put an X in the checkbox and I make a note about why it got screwed up (like “I was too tired,” or “I ran out of time because I was impulsively doing other things”).
  5. Either during the day or later on, I take different colored highlighters and mark the checkboxes of the things I got done with green. I mark the checkboxes of the things that got messed up with pink (I hate pink). And I mark the checkboxes of the things that didn’t happen through no fault or doing of my own with orange.
  6. At the end of the day — or on the morning of the following day, if I am too tired the night before — I sit down with the list and look at how I did. I make notes on the paper about what caused me to mess up. I think about what my day was like and I think about how I could have done things differently.
  7. I also make a point of learning about the parts of the brain that manage those things I have trouble with, and throughout the course of my days, I exercise those parts by doing those things in enjoyable ways, so the affected parts work better when I’m doing necessary things I’m not that keen about. For example, I have had a lot of trouble reading and comprehending what I read, since my last accident in 2004. To get myself back on track, I practice reading things I really enjoy and get my blood pumping — like action adventure thrillers and magazine articles about things that fascinate me, and books about current subjects that others are talking about. Malcom Gladwell is a great one to read, because he’s a great storyteller, and so many people have read his best-selling books. I can discuss what I’ve read from him with just about anyone, and they (unknowingly) help me remember and process what I’ve read. The trick with this, is to make sure I don’t wear myself out. I can tire myself out quickly by being too consumed by activities that fascinate me, and when I’m tired, it introduces a whole other set of complications.
  8. When I am putting together my list of activities for the next day, I make a point of referring to my lists from the past days, seeing what was derailing me, and figuring out coping strategies for how to handle my new set of activities. Failure is not an option for me, and some things MUST be done well, or they should not be done at all.

It’s an ongoing process, and it’s become part of my everyday routine. It is extra work, but oh, how it pays off!

It has taken me some time to get this system together in a way that works for me. Give Back Orlando’s approach is excellent, but I needed to tweak some things for my own purposes. I need to be a bit less rigid with how I manage my time, than they appear to be — I understand the need for holding to a schedule, but I have to be more flexible, because that is how my daily professional life goes — it’s a stream of constant interruptions that keep me on my toes. Having my list nearby all the time helps. I also put it into my computer at work, so I am tracking my progress throughout the day.

I am also more expansive than Give Back Orlando with my explanations for why things messed up. Fatigue and exhaustion factor in very strongly for me, as does anxiety, so I focus on them pretty intently.

But no matter what the differences between me and GBO, the approach is more or less the same — decide how you want to live your life, and then figure out what issues are keeping you from accomplishing what you want to accomplish. Address those issues on a case-by-case basis, watch for emerging patterns. Learn about the things that are holding you back. And never, ever, every give up working at achieving what you want to achieve.

(Speaking of Malcom Gladwell, in his book “Outliers” he talks about how you need to do something for 10,000 hours in order to get really good. Regardless of innate talent, people who do what they do for 10,000 hours are consistently better than people who practice/do less. So, it looks like true success is really a matter of time. I’ve got time — it’s one thing I do have!)

If you do your daily planning and analysis and remediation regularly and with intention, and you believe that you are capable of change in your life, I truly believe that (no matter what anybody else has to say) you can overcome the cognitive-behavioral and physical pitfalls of traumatic brain injury. You do not have to abandon your hopes and dreams and settle for less in your life.

You just have to figure out what you want to do, be determined to do it, and work your ass off to get there.

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB