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:
- 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.
- 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.
- Re-defining “mistakes” as opportunities to learn and change and grow, and not shying away from making as many mistakes as possible.
- 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.
- 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.