The MTBI Downward Spiral

I’ve written before about how ignorance and narrow-mindedness produce greater disability than injuries alone.

TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

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

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

For example — say a guy with a wife and two kids and a good job is in a car accident and smacks his head against the car window. I’ll call him (Car Accident Guy.) He’s knocked out for a few minutes, and when he comes to, the EMTs take him to hospital, check him out, determine there’s no serious damage, and turn him loose. He goes  home and lies down for a while, then the next day he’s up and at ’em again, ready to get on with his life and just relieved he wasn’t hurt worse in the accident.

He seems fine to everyone at home and at work — the only problem is, all of a sudden, he can’t seem to do the simplest things — like going to the store. Or completing a job his boss assigned to him. He keeps getting distracted by the simplest things, and when his wife sends him to the store to pick up milk and bread and his prescription refill, he ends up coming home with milk and eggs and shampoo, instead. In the process, he runs out of his daily dose of blood pressure medication, and his wife is upset, impatient and pissed off at him.

His wife tries to overlook his forgetfulness at first, but after a while, she starts to get pretty fed up with this guy. They quarrel and bicker, and he becomes nastier and nastier when they fight. He takes it out on his kids, too, yelling at them when they do things like turn the t.v. up too loud or come home late for dinner.  His wife’s patience gets shorter and shorter, and she feels like she has to double-check everything he does. He used to be so reliable, but now he’s just not trying… What’s wrong with him?

At work, things are getting tougher, too. Car Accident Guy’s boss has been noticing how he’s not delivering results when he promises he will. The reports are late. The analysis is incomplete. And he’s started making stupid mistakes he doesn’t even catch till someone brings them to his attention. Even when folks do show him how he screwed up, he’s contentious and argues about it, and his relationships with his co-workers seems caught in a downward spiral. His boss tries to talk to him, but he can’t seem to sit still in their meetings, and he keeps changing the subject or talking about other stuff that has nothing to do with what they’re there to discuss.

All the while,  Car Accident Guy has been missing his daily blood pressure dose, and his BP has been climbing — especially when he’s angry. He seems even more angry than usual, in fact, and his wife finally prevails on him to see his doctor. When he goes to the doctor, his blood pressure is way out of control, and his doc becomes very upset with him for not taking his daily dose. The doc considers him non-compliant and lectures him, and Car Accident Guy takes issue with his tone and snaps back at him. The doc, who has had a long day and isn’t in the mood for this crap, puts him on notice that he’d better clean up his act, or else. Car Accident Guy is immediately sorry for the tone he took with the doctor, and he apologizes and promises to do better. Feeling self-conscious, he tries to listen to the doctor and get what the doc is saying, but he can’t seem to focus, and he loses the piece about needing to schedule a stress test in six weeks. He takes the new BP med prescription from his doctor and puts it in his shirt pocket — but he’s distracted by what the doc is saying to him, so he isn’t actually aware of which pocket he put the script in.

Done with the appointment, he sails out of the office, forgetting to make the appointment for the stress test, trying like crazy to recall — from memory — the exact content of the his visit, so he can be sure to get himself back on track.

When he gets home, his wife asks him how the appointment was, and he has trouble remembering. He tells her it was okay, but when she asks him what the doctor said, he can’t remember exactly, so he avoids her question. She senses he’s covering something, and she’s concerned that there’s something seriously wrong with him that he’s not telling her. She becomes anxious and starts to press him for details, which he cannot recall exactly. He snaps back at her, and the conversation escalates to yet another argument.

Exhausted and frustrated, he stomps off to bed, tosses his clothes in the hamper, and sleeps the rest of the day. While he’s sleeping, his wife does a load of laundry — including the shirt with the prescription in the front pocket.

When he wakes up, Car Accident Guy remembers he needs to take his BP meds, and he also remembers he needs to get his new prescription. He can’t remember where he put the script, exactly, but it must be in the clothes he was wearing at the doc’s office. Unfortunately, his shirt and pants have gone through the laundry, and the prescription is in soggy tatters in the washer. Furious with himself and furious with his wife, Car Accident Guy flies into a rage and verbally attacks his wife, his kids, anyone who is nearby. He drives off in the car, calling his doctor on his cell phone for a new script.

The doctor is noticeably irritated, and he thinks Car Accident Guy is not committed to taking care of himself. He writes another script and faxes it to the pharmacy, so his patient can pick it up. Car Accident Guy thanks the doctor and heads to the pharmacy, but on the way there, he’s distracted by a yard sale along the road. He pulls over and spends an hour and a bunch of money buying some pieces of furniture he doesn’t really need, but that look nice and are available for a good price.

He loads the furniture in his car and heads home. When he gets there, his wife is still angry with him, and she’s packing to go to her mother’s house with the kids. In the meantime, his anger has completely dissipated, and he doesn’t understand what she’s still angry about. He also can’t understand why she isn’t pleased with the bargains he found. She asks him where his prescription is.

“Prescription?” he asks…

That’s more or less a cause-and-effect narrative of what can happen, just from a couple “simple” problems like sleep disruption, distractability, and lower anger thresholds — all of which are common in TBI. Even MTBI (supposedly “mild”) can produce life-wrecking after-effects. Believe me. I’ve lived it. I know. Car Accident Guy’s story is not terribly different from my own, though my own circumstances are different — still, the types of problems mulitiple MTBIs have brought me are not that different from these.

It’s eerily easy to end up in a downward slide — in no small part due to sleep issues, which contribute to distractability, which contributes to frustration, which contributes to lowered anger flashpoints.

But in the same vein, being aware of the issues up front, makes it eerily easy to avoid situations like this.

Getting enough sleep is a start. Being mindful of your energy level is another. Keeping notes about what you need to do is yet another. And stopping to check in with yourself and double-check your work is yet another.

TBI, even mild traumatic brain injury, can totally screw up your life. The good news is, it doesn’t have to.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Treating TBI

Treating traumatic brain injuries @ the LATimes

They can’t be set like a bone or staunched like a bleed. They can be difficult even to detect, but the military and others are working to improve care.

Larry Ewing’s life changed last year on a construction site in Victorville; Larry Carr’s changed in 2004 on a road in Iraq. Unlikely brothers in arms, both men now share the same invisible wound — traumatic brain injury.

They tire easily, forget often and lose their balance and concentration without warning. They struggle to make peace with personality changes that have made them barely recognizable to loved ones.

Read the whole story here

But I’m not afraid…

Well, it looks like I’m going to be dropping my current psychotherapist. After working with them for 6+ months, I’m seeing a regular pattern that I’m not comfortable with — every new piece of information I reveal about my past injuries and difficulties, and my present challenges, increases their trepidation about my present activities and my future prospects.

How many times can you sit in a room and have someone tell you that your hopes and dreams are unrealistic, given your neurological profile?

How many more weeks am I supposed to spend making room in my schedule for someone who actively discourages me from living my life — and paying them to do it?

Okay, granted, I do have a lot of difficulties and challenges, and no, it’s not easy. But the thing is, I flatly refuse to give in to the lot of it. I just refuse. I am not afraid to live my life, I am not afraid to stumble and fall. I am not afraid to take on new challenges and see what I’m capable of doing. I’m more afraid of never trying something, never taking a risk, never finding out just what I’m made of.

I have been injured, this I know. I have my challenges and difficulties. That much is clear. But I’m not afraid to step out and do what I need to do, to move myself along my life’s path. I have one life, and one chance to live it. If I sit by the sidelines, like this therapist apparently expects me to, I just don’t think I can live with myself. That’s not living — that’s surviving. Subsisting. And I’m built of better stuff than that.

I also have excellent resources on hand to help me along — namely, information and promising stories from Give Back Orlando and other sources — that provide me tools and orientation to get my life back in order. The vast majority of the issues I have are logistical, and if I just modify how I do things, tweak the execution a bit, I can get myself on the right track, and keep myself there.

There’s no mystery to it, no matter how mystifying the brain is. Bottom line is, my mind is what runs things, not just my brain. And when I devote more attention to being mindful, well, that solves a ton of problems out of the gate.

It’s when I’m not mindful — when my broken brain gets the upper hand and convinces the rest of me that it’s just fine, going it alone — that I get into trouble.

Real trouble.

So, my problems are by and large fixable. And the ones that aren’t, I just avoid like the plague. I delegate things to others who know better how to do them. I solicit help from people who are just dying to lend a hand. And I richly reward people with ample thanks and a ton of praise. I feed them, and they help me. And vice versa. It’s all good.

The one major problem I have, is I’ve got a psychotherapist who seems to be afraid of their own shadow. I dunno — I think within a certain context, they’re perfectly fine. At least, they were, three months ago. Maybe I’ve just grown a bit. Maybe I’ve just evolved. And their orientation is no longer helpful to me. That could be. I have been known to shift very quickly, and it wouldn’t surprise me if I were advancing in a sudden burst along my recovery.

But they don’t seem to recognize that, and they keep cautioning me against doing things like taking on responsibility and following down a career path that leads to more money. Just yesterday, they were telling me (as though I don’t know it) that more financially rewarding jobs entail more sacrifices from those who hold them. Uh, excuse me? Is that something they think I don’t know? I’m not so sure they realize who I am and what I’ve done with my life. I’m not sure they realize that it’s possible to live productively and radically well, even after a bunch of concussions. But even with me sitting right in front of them, telling them about how well I’ve been doing lately, they can’t seem to see it. Or they distrust it. Or they distrust me.

This makes me nervous. It makes me very nervous, indeed. And I woke up last night from a nightmare about a wildfire sweeping through my neighborhood, driving all these wild animals ahead of it. (Not sure how the lizards and wildcats and wildfowl got into the suburban neighborhood in my dream, but I’m sure that symbolism is all about me and the less “civilized” aspects of my personality.)

Warning bells are going off, and it looks like I’m going to be shopping for a new psychotherapist again… Fortunately, I’m seeing my neuropsych this afternoon, so I can ask them if they know anyone who specializes in therapy within a brain injury recovery context. They’re on the same page as me — totally devoted to realizing all the amazing possibilities of life, and refusing to settle for less — so I have more faith in the resources they might recommend.

The bummer is, the current therapist I have is listed as someone the Brain Injury Association in my state recommends. I’m not sure if I should mention my experience to them, as I don’t want to trash them. But if they’re running this head trip on me, what might they be doing to others?

I have to wonder.

Anyway, it actually feels good to be coming to this decision. I’ll talk it over wiht my neuropsych and see what they have to say about it, and then I’ll move from there.

{ Sigh }  This rehabilitation process can be a tiresome road at times. But it sure beats the alternative!

Onward.

A good sturdy kick in the behind

Every now and then, I need a good strong boot in the butt. Not a gentle reminder, not a tender prompt, but a real impact that stings at the start, but ultimately turns out to be the lesson I needed — a lesson that I either “get” and live my life better in the aftermath… or if I don’t get it, I sink like a rock.

I have fortunately had the good sense to go back to reading the Give Back Orlando materials on Self-Therapy for Head Injury – Teaching Yourself to Prevent Head-Injured Moments. I had told my diagnostic neuropsych about the materials, and they said they thought it’s “good science” and is consistent with what both of us believe — that just because you’ve had a head injury does not mean you have to settle for a marginal life limited by your issues. There are things you can do to offset or compensate for or heal the issues you’ve got. A head injury does not have to be the end of the story.

And after I told my neuropsych about the material, it reminded me that I have not gone back to it lately, and I have not in fact read the whole way through the material. It was embarrassing to admit it, but I’m going to put that embarrassment to good use, and remedy the situation.

I have not been nearly enough focused on my recovery, of late. I have not made it a priority. And, in fact, after reading the section on priorities: CHAPTER TWENTY-SIX: SETTING MY PRIORITIES in the Advanced Section, I realized that I need to do something about this. I’ve still got a long way to go to make this somewhat leaky boat of my life seaworthy again. I have made tremendous progress, over the past years — especially since my fall in 2004 — and especially in the past 6-8 months. But I still have a long way to go, to keep the screwed-up automatic responses of my “alternative” brain from messing up my life.

I have a lifetime of bad habits that came out of injuries to address. I may not fix them all, and I may never even discover them all, but by God, I’m going to at least take a shot at doing the best I can to overcome them, turn my thinking around, and live the life I know I’m meant to live.

There is a lot at stake with me. Personally and professionally. I’ve started a new job, which is a gateway to better paying work that suits me better than the production-type work I’ve done for the past 20 years. I’ve become very good at following instructions from other people, and I excel at doing what I’m told. That’s come from a lifetime of hard work and deliberate refinement. My ability to follow explicit directions has been a reliable meal-ticket. It’s bought me a house and two cars and made me far more functional that someone with my history of head injury “should” be.

But now I need to bump it up a notch and see where else my abilities can take me. I have considerable capabilities, in addition to my limitations. I have a raft of strengths that are just sitting around waiting to be used, while my relative weaknesses play havoc with my daily life. I spend so much time managing the cognitive-behavioral challenges I have, that I rarely get/take the time to focus on building my strengths.

And I have languished.  For over 40 years, I’ve settled for less than I was capable of having/doing/being, because of the corrosive effects of those invisible challenges. What a shame and a waste. I have let my talents and abilities sit on the back burner, while I’ve put out fires flashing up all around me. I have not focused fully on developing my strong suits, because the weakling aspects of my person have monopolized my attention to the point of distraction, dissipation, and inertia.

Good grief.

But I really can’t spend any more time, right now, bemoaning that. The time I spent worrying about what’s gone before, is time I don’t have to spend on thinking about what’s yet to come. And I need to think about the future. I have issues, I know that. I have had difficulties in the past. I know that, all too well.

I have spent the past year and a half examining the parts of my life that have gotten totally hosed — specifically by TBI. The whole point of doing this, is not to feel bad about it, to beat myself up, and back away from life. The point of doing this, has been to identify the things that need to be fixed, and then come up with a way of fixing them.

Or compensating for them.

Or avoiding the stuff that just can’t be fixed.

Now I have tools and support to address the issues I know I have. And that’s what I’ll do.

So, what needs fixing? This morning, I’m focused on my long-time bad habit of not following through on what I promise to do. For a lot of different reasons, I tend to commit to things, and then I don’t complete the things I say I’ll do. I get sidetracked. Distracted. Confused. And I back away from the job, going off to do something else, instead of buckling down and doing what I said I would.

It’s one thing, if I do this with myself — I’ve done it all my life, with countless personal projects planned and started and then never completed. But I’ve also done it with people beyond the confines of my head. Ever since I was a kid, failure to complete was a huge issue with me. And it’s dogged me into my adulthood.

And now that pattern needs to change.

So, I’m changing it. Deliberately. Intentionally. With real resolve and commitment.

One of the things I’ve been looking at, is why I lose the fire. Why do I start things so enthusiastically, and then lose my enthusiasm? There are a number of reasons, but the main one seems to be that in the midst of all the details, I lose sight of the Big Picture. I lose track of what I’m doing and why I’m doing it. I forget the whole purpose behind it. I forget the reasons I got excited to begin with. I lose track of where the details fit in terms of the overall project. And I get lost.

Then I walk away. I lose sight of my Priorities, which inform the Big Picture of my life.

From the GBO Material:

Summary: Good decisions are made in accord with your personal priorities.

The decisions you regret making are the ones that conflict with your priorities.

The head injury makes it easy to overlook them. By bringing your priority list up to date and using it actively to guide your decisions, you can take better control of your life and make sure that the decisions are guided by your needs.

The Issue: Planning depends on having a clear sense of what’s important to you. You can’t make decisions about what you are going to do, or how you are going to spend your money, or which opportunities you are going to take and which you are going to let go, unless you know what your priorities are. Knowing priorities is something an adult normally does automatically, but it doesn’t work automatically after a head injury. After a head injury, too many decisions are impulsive. They are made to pursue something that is interesting at the time, but without thinking about how the higher priorities will be impacted. For example, survivors get mad at the boss and blow him off, losing the job. Only later do they realize how important the job was to them. If they had only thought about their priorities at the time, they might still have that job.

Yes, too many of my decisions are impulsive. I don’t hold myself firmly enough to a set plan of action. I make my notes and plan my activities, but then I get pulled off in all sorts of different directions by distractions and entertaining sidelines. I start out researching something necessary, then I get intrigued by an experiment I want to try, and I get sucked into that for hours. Eventually, I resurface and realize I’m so far behind, I’ll never get the important things done that needed to be done that day.

And I get down on myself, feel bad, beat myself up, tell myself, “You did it again…” and that takes a toll on what little self-confidence I started with. Slowly but surely, one small failure after another has chipped away at my self-confidence, undermining my belief that I can get things done. Bit by bit, I’ve allowed this to erode my sense of capability… it’s a wonder I ever start anything.

But I do start. I start again. Day after day, week after week, month after month, year after year. I start again. I take another shot. I don’t give up. For whatever reason. There is still a part of me that hopes, still a part of me that’s willing to try. I’m not sure why or how, but that’s not for me to question.

The missing piece is not the starting of things. It’s the continuing. It’s the completing. Tying up loose ends is the temperamental problem-child of my productivity repertoire.

Now, I’ve started again — this time with a new job. And this time I really don’t want to make the same mistakes I’ve made in other places. This time, I need to complete. I need to continue until I complete. I need to clearly and succinctly identify what needs to be done, and I need to do it. This is not optional. This is essential. It’s not up for discussion. I absolutely positively need to make sure I follow up on what I say I’m going to do it, and come hell or high water, by God, I have to get the job done.

That means controlling my impulses. That means mastering my distractions. That means keeping the Big Picture in mind and not losing sight of my promises. That means re-prioritizing my life — clarifying my priorities, to begin with. It means reminding myself daily of what I want, what I need, and what I have to do to get where I’m going.

I am by nature a very disciplined person. I have principles, and I have good intentions, and all I really want to do with my life is help others and reduce the quotient of human suffering in the world. The problem is not with me and my character. The problem is with how my brain works, and how it works against me.

That being said, I’m putting together my toolbox for dealing with all this … complexity

Again, from GBO:

The whole process of thinking about priorities has to be different after a head injury. Before, you probably automatically threw out unrealistic goals. Now you automatically accept unrealistic goals, and you can be realistic only by carefully looking at each goal and judging whether it will work or not. For example, a patient who was highly successful in going to college, getting top grades, and planning a career, was totally unsuccessful in setting goals for romantic relationships. He wanted a really hot, young woman, while he was now middle-aged, physically disabled, and relatively poor. He had gone without a date for 12 years because the women he met who matched up with his priorities would not date him, and the ones who would date him did not match his priorities.

If your priorities are unrealistic (especially if they are based on what your old self could do), then your life will be an exercise in frustration and failure. The only way to lead a successful life is to make sure that you ask yourself to do only those things you are really capable of doing. I cannot begin to properly explain how hard this is to do. It takes even the best recovered people years to reset their priorities so that they are truly realistic. To get there, you need to think about it often, and work on it regularly. But the reward for getting your priorities straight is sweet: Your life begins to make sense again.

Even after you have adjusted your priorities, it doesn’t guarantee that you will use them. Every time you make an important decision, your priorities control your decision process only after you make yourself stop and think about them.  . . .

I need to develop realistic goals. The type of goals that take into consideration not only the abilities I have, but how much time in the day I have. I need to let go of unrealistic expectations and goals and focus on the ones that make sense for me.

That means doing things like jettisoning a lot of the little projects I have sitting around in the wings. If they don’t immediately serve my Overall Goal of paying my mortgage and all my other bills, they have to go away. If they don’t serve my Important Goal of keeping my job and doing well professionally, then they have to go away. If they just serve to distract me from my discomfort, like a recreational drug of some kind, then I have to live my life without them. I don’t drink and smoke. Why would I dissipate my energies and wear myself out on little projects that serve no purpose other than to pass the time and get my mind off my troubles?

Focus… Focus in… That’s what I’m about, now. It’s what I have to be about. I can’t afford to screw around anymore. I’ve found work I love to do, that I can excel at, and now I need to make doing it a top priority. I realize more and more, each day, that my neurology mucks up my life in countless little ways that add up to big problems. And I need to make my ongoing recovery an even bigger priority. First things first. Figure out what matters. Ditch the rest. Be honest, be brutal, be effective, and in the process get my life back to a state that actually makes sense to me.

Onward.

Writing lots to keep things simple

I had an epiphany today during my morning exercise. I realized that one of the reasons my life tends to fill up with all sorts of activities and I get swamped by so much to do – and spread so thin, I can’t focus fully on what’s in front of me… is because I forget what I am supposed to be doing. Not only that, but I forget why I am supposed to be doing it.

Someone wrote to me the other day that they used to feel like the guy in “Memento” who has to write everything down, because he can’t remember, from day to day, moment to moment, what he’s supposed to be doing.

It got me thinking… and I realized that I’m like that to — not on so extreme a scale, but this Swiss cheese memory of mine is problematic. And with my constant restlessness, I have so much energy, that I have to be doing something, but I don’t remember what exactly I’m supposed to be doing, or why, so I end up launching into another bunch of activities without realizing I’m forgetting something.

It’s like I have a rushing river in my head, and the gaps in my memory are like big boulders in the river. I’m in a boat that’s headed down river, and because all these boulders are in the way, I can’t go in a straight line. I end up flying downstream at top speed, but I get spun around, I bump into things, I go way out of my way on tangents, and I have to paddle like crazy to keep upright.

Meanwhile, the rest of the world is paddling downstream in rivers with far fewer rocks, they are better able to keep upright, and they arrive at their destinations a lot less exhausted and bedraggled and frazzled than I do.

Literally, when I get up in the morning, it’s like I’m starting a whole new day. That’s great for my optimism and general cheerfulness, but it’s not so great for my effectiveness. I tend to not think about what I was doing the day before, and how it ties in to what I’m supposed to do today. And if I’m not careful, I can get caught up in a whole lot of stuff that I don’t need to be doing, and which keep me from finishing what I’m working on, but which seem so interesting at the moment…

It’s been a huge problem for almost as long as I can remember — and even more so, since my fall in 2004. It’s impacted my work and my family life and my self-esteem, and I can hardly believe it’s taken me this long to realize this fact and the impact that it’s had on me.  No wonder I can’t get anything done in a timely manner — I keep forgetting what I’m supposed to be doing. But at least now I am aware of it. (It’s amazing what happens, when you communicate with another human being.) And now that I’m aware of the problem, I can devise a strategy for dealing with this.

My strategy is:

Keep a running list of the really important things I’m supposed to be doing, and make sure it is in easy view of me each and every morning. Keep that master list with me throughout the course of the day, and keep checking back with it.

I have to refine this, certainly. I have to figure out how to prioritize and manage my items, so I don’t get completely overwhelmed. A spreadsheet will probably help. I have one that I use for the Big Things I Need To Fix in my life. Now I need to come up with a way to record and track the everyday things I’m working on. I may also use a handwritten list. I’m still working it out, as I learn more about how my brain does — and doesn’t — work.

I do know that the more I write down about what I’m supposed to be doing, the simpler it becomes to get things done. My writing (especially in my journals) extends beyond the list-making and into the story-telling aspects of my life. When I write things down in detail (tho’ I have to be careful of getting swamped in the details), it helps me envision where I want to go and what I want to achieve — and why. The more I can work out in my mind, ahead of time, what I want to do, the less I have to think about it later. I can just look at my list and, step by step, get things done that need to be done. It’s important. Very, very important.

Well, it is a process, and it’s one that keeps evolving, as I get more and more information. The bottom line is, now I realize that having holes and weaknesses in my memory is one of the root causes of my ineffectiveness over the years. It’s not because I’m a loser or lazy. It’s because I literally forget what I’m supposed to be doing, but I have so much energy, I can’t just sit there, so I start other things… and then forget to complete them. It can be maddening. But that’s where tools and strategies come in.

It’s all a process. I’m just relieved I’ve realized how this aspect has impacted me. After all, you can’t fix something if you don’t know it’s broken.

Goal 2: Doing what I plan/promise to do

Now that I am moving into this new job(!) I am really taking a hard look at my habits and patterns of the past several years. Since I fell down the stairs on Thanksgiving weekend of 2004, I have had a dickens of a time following through on what I promise I am going to do.

There are a number of reasons for this:

  1. I neglect to write down what I commit to, and I forget I’ve committed to it.
  2. I get bogged down in the details of doing it, and I end up backing away from the task because all of a sudden it seems so enormous that I cannot begin to tackle it.
  3. I start to doubt myself, and I quickly give up.
  4. I just cannot sustain the attention to follow through.
  5. I don’t build enough accountability into my action plan.

This has got to change. I cannot step into this new role, behaving the way I have been. I have been doing better, on and off, over the past six months, but I still have let a bunch of things drop that I never should have abandoned. That haunts me. And I need to change this behavior.

So, I have started aggressively tracking my behavior each day. I have my notebook, where I track what I do, what the results are, and the reasons why I succeed or fail. And I get my colored highlighters and mark along the edges of the pages to show the nature of my activities — if they were positive experiences that came from positive choices and actions, or if they were negative events that arose from poor decisions and behaviors.

I use green to mark the good stuff, pink (which I hate!) to mark the bad stuff, and orange to mark the in-between stuff.

I mark in the margins of my notebook, so I can see the progression of events — and I can see at what times of day I have problems. I have REAL problems in the early/mid-afternoon. That much is clear.

So, tomorrow I am going to do the really hard stuff first. Get that taken care of, and then do easier things in the afternoon. And I am going to mark down the results of my choices and actions. I’m already seeing results, after doing this for about a week. And if I keep on this track, I am hopeful of getting my act together in ways that have eluded me for a number of years.

Most of all, I’m going to be focusing on advance planning — like they say in the Give Back Orlando material, I am going to plan my next day the night before, when I am relatively fresh and not pressed for time. And I need to get clear in my head up front how I’m going to go through my day, so I can prepare mentally and emotionally for it.

Tomorrow is going to be a challenging day. I can feel it. I’m finishing up work from my old job and navigating my progress into my new position. And I need to keep a steady head and steady hand while I’m at it.

If I screw this up, I just don’t know what I’ll do. So, I’ll do everything in my God-given power to NOT screw it up.

At least I have tools. So I’ll use them.

Onward…

A happy accident?

Lately,  I have been reading about right-hemisphere brain injuries, and it seems to me that some of it applies to me.

What are some signs or symptoms of right hemisphere brain damage?

Cognitive-communication problems that can occur from right hemisphere damage include difficulty with the following:

  • attention
  • left-side neglect
  • memory
  • organization
  • orientation
  • problem solving
  • reasoning
  • social communication (Pragmatics)

Attention: difficulty concentrating on a task and paying attention for more than a few minutes at a time. Doing more than one thing at a time may be difficult or impossible.

Yes, in some cases, that would be me…

Left-side neglect: a form of attention deficit. Essentially, the individual no longer acknowledges the left side of his/her body or space. These individuals will not brush the left side of their hair, for example, or eat food on the left side of their plate, as they do not see them or look for them. Reading is also affected as the individual does not read the words on the left side of the page, starting only from the middle.

Doesn’t sound like me, thank heavens…

Memory: problems remembering information, such as street names or important dates, and  learning new information easily.

Yes, in many cases, that would be me…

Orientation: difficulty recalling the date, time, or place. The individual may also be disoriented to self, meaning that he/she cannot correctly recall personal information, such as birth date, age, or family names.

Not so much…

Organization: trouble telling a story in order, giving directions, or maintaining a topic during conversations.

Yes, in too many cases, that would be me…

Problem solving: difficulty responding appropriately to common events, such as a car breakdown or overflowing sink. Leaving the individual unsupervised may be dangerous in such cases, as he or she could cause injury to himself or herself, or others.

Sorta kinda, in some cases, that would be me…

Reasoning: difficulty interpreting abstract language, such as metaphors, or responding to humor appropriately.

Sadly, yes. Though I’m a lot better now, than I was when I was a kid.

Social communication (pragmatics): problems understanding nonverbal cues and following the rules of communication (e.g., saying inappropriate things, not using facial expressions, talking at the wrong time).

All too true, sadly. Fortunately, I’ve learned a lot over the years – mostly from trial and error, much to my chagrin – about what works, and what definitely does not.

I also came across this about right-hemisphere brain injury:

So what happens if one side of the brain is injured? People who have an injury to the right side of the brain “don’t put things together” and fail to process important information. As a result, they often develop a “denial syndrome” and say “there’s nothing wrong with me.” For example, I treated a person with an injury to the right side of the brain–specifically, the back part of the right brain that deals with visual information–and he lost half of his vision. Because the right side of the brain was injured, it failed to “collect” information, so the brain did not realize that something was missing. Essentially, this person was blind on one side but did not know it. What was scary was that this person had driven his car to my office. After seeing the results of the tests that I gave him, I asked, “Do you have a lot of dents on the left side of your car?” He was amazed that I magically knew this without seeing his car. Unfortunately, I had to ask him not to drive until his problems got better. But you can see how the right side puts things together.

I’m not blind on my left side (I think…  joke!), but I do sometimes wonder if the right-side brain injury I had when I was eight might be mucking with my ability to tell whether or not I’m able to do the things I think I can do. I’m up for a promotion at work, and part of me is wondering if maybe I might be over-estimating my ability to do the job. I know I’ve been having a lot of trouble, doing the job I’m doing now, and I’m not sure why I think I’m going to be able to do something that’s even more challenging. But part of me is quite confident I’ll be able to figure it out.

Go figure.

It’s kind of wild, how I’ve been able to pretty much sail through a lot of tough spots, without being really seriously derailed by anxiety over them. It’s almost like I’ve been  blind to the dangers and risks of certain types of work — certain tasks that nobody I worked with, would take on, so I got to do them… the dangers and risks associated with being around certain types of people and pursuing certain types of activities, like traveling alone in foreign countries and walking down rough inner city streets at 10 p.m.

I remember reading about how right-side brain injuries can lead to denial of illness, not to mention getting facts and figures all turned around. And that has sorta kinda been setting off alarm bells in the back of my head, when I’ve contemplated getting this new job. I know I can’t continue to do the kind of work I’m doing now. I am coming to the realization that my fall in 2004 has sort of closed the door on that type of work. I’ve been able to do similar types of work temporarily over the past 5 years, but now that I’m in it full-time, it’s really turning out to be impractical and self-defeating. I need to make a change.

I just wonder if this is the right change.

Now, thinking back, I’ve got a looooooong history of struggling with details and not being able to accurately assess my abilities. The second head injury I can remember was when I was eight years old, and some kids who didn’t like my looks were throwing rocks at me. They hit me on the right front side of my head, above my temple, and I was knocked out for a while. I’m not sure how long I was knocked out, because the sibling I was with can’t recall the exact details of the incident, but I do remember opening my eyes and seeing them crouched over me, crying.

And when I got home and my parents found out and made me lie down, I remember having to lie on my left side, facing the back of the couch, getting all hot and antsy and irritable and restless because I hated the feel of my breath against the back of the couch… and my dad wouldn’t let me go to sleep.

That wasn’t the first injury I had — and lately, I’ve been bothered by an old, old memory of when I was in daycare and I was playing with some of the older kids, and something happened where I got hurt or something, and one of the older kids ran downstairs to tell the lady who was watching us, and she came upstairs and yelled at all the older kids and brought me back downstairs. I think I got hurt, but I’m not sure. The memory is still working itself out, and it may never fully form.

But anyway, that time I got knocked out by the kids, I did get hit on the right side, above my temple, towards the top of my head. And whether or not it was the specific cause, I have had a lot of difficulties with the kinds of things listed under right-hemisphere brain injury. And one of the things that has really been a hallmark of my life, has been this unwavering conviction that all is well, that I’m fine, that everything is hunky dory, and no matter what, everything will work out just the way it should. Now, some folks firmly believe that as a matter of their spiritual or moral makeup, but with me, it’s been almost an unassailable “fact” that I flatly refuse to refute. Even when things are at their worst, there’s a part of me that’s like, ‘Oh, well — fiddle-dee-dee!’ and goes merrily on its way, no matter if all the world around me is going to shit.

I can feel like death warmed over. I can be hobbling along in excruciating pain. I can be teetering on the brink of personal financial ruin. I can be pushing the limits of good taste with big, angry people who have a chip on their shoulder. I can be face to face with big, nasty people who want nothing more than to pounce on me and beat me to a pulp. But I merrily fly in the face of whatever danger presents itself — not because it gives me a charge, but because I frankly don’t perceive the danger.

To me, it’s just not there.

It’s kind of wild, though, how things eventually worked out. Okay, so I have almost been attacked and rolled by disadvantaged people looking for money. I was almost abducted by a dirty old man when I was a little kid – I almost ended up on a milk carton, dude. Okay, so I have been in a number of really hazardous situations, and I am frankly lucky to be alive. But either there is a God and a heaven full of angels looking out for me, or there’s something about the quantum field that makes my cluelessness prophylactic, and protects me like a big-ass cosmic condom as I poke my way through life — sorry about the image — it’s late, and I’ve had a long day;). It’s like my ignorance and blindness to the dangers negates them, or something.

Either that, or the world isn’t nearly as dangerous as my friends (some of whom have had left-brain injuries) tell me. I hear the left-brain injuries make you over-cautious, and I’d definitely concur with that.

Well, I can’t get too tweaked over it. I’m going to stand up straight and walk face-forward into my job situation (hopefully not ramming the glass door with my nose in the process), and I’ll do my best under any and all circumstances. I’ll also just have to trust that there is a God and a heaven full of angels who are at the ready… or at the very least, the quantum field is sensitive to what I’m “putting out” and only organizes its atoms around the dangers I’m actually aware of.

It’s all a deep mystery, to be sure. But it might be a good idea to keep in mind that one of my early injuries was to the right side of my head, and that may cause me to over-estimate my abilities. Somewhat.

Well, there’s only one way to find out if I’m right or wrong about myself. And that way is to give it a shot and see what happens.

Putting it into pictures, getting on the good foot

It’s been a good weekend, thus far, and I had a great day yesterday.

I started out Saturday morning doing my usual bike ride. I rode 30 minutes, and then I lifted weights for about 10 minutes after. The weights I’m using are much less than I used to lift, and part of me feels deficient for having let myself get so out of shape. But the athlete I once was is still living in me, somewhere, and they know that any sort of progress needs to be made systematically and with good sense. There’s no point in wasting time on regret and self-recrimination. The point is to do what can be done, at that point in time, and do it in such a way that it serves as training for later, when I take on larger tasks, heavier weights, higher stakes activities.

While I was riding the bike, I thought through the day ahead of me. I got my trusty old clipboard with some scrap paper on it (so I wouldn’t feel too pressured to not make a mess while I was writing), and I wrote notes about what I wanted to do that day, as well as thoughts that came to me.

The first thought that came to me, was on the wings of an image I saw in a New York Times article about a young many who sustained a brain injury in a motorcycle accident. Adam Lepak, 19, who suffered a brain injury, is being led through a field by two friends of his. His story is pretty moving, especially considering the degree to which he was injured. He was in a coma for a while, which is a lot more than I can say for myself. It left me feeling both grateful and frustrated… and all the more determined to do something about my own situation.

Reading his story and having a visual of him just trying to walk across a meadow is really helping me. In particular, the passage about really working the brain has stayed with me:

No one knows what treatments or exercises will drive an injured brain to preserve or reconstruct a coherent identity — to pave its neural back roads. But neuroscientists generally agree that it can do so. The brain is “plastic,” recent research suggests; intact areas can recruit nearby, healthy brain tissue to bypass damage and compensate for lost function.

It does not seem to happen, however, without effort; to reroute signal traffic down back channels, the brain needs traffic, scientists say. It needs to be active, solving problems, meeting social expectations.

Reading the article about the progress this young man has made really lit a fire under me. What also lit a fire, was finding myself in a position, last week, to make a case for getting a promotion of sorts — changing the sort of work I do, from doing straight-ahead development/coding work (which I frankly have been struggling with, on and off, for the past five years, ever since my last injury), to more conceptual, higher-level abstraction- based work.

A new slot has opened up, with the arrival of a new uber-boss at work, and they are looking for someone who can get their head around the crazy-ass intricacies of the organization I work with, and identify ways to make sense of it. The opportunity is about as right up my alley and consistent with my “portfolio” of experiences at the company, as you can get, and I jumped at the chance to go after it. I talked to the uber-boss. I talked to my new boss, who is uber-boss’es underling. I talked to my former boss, who first suggested that I would be just the person to do the job, when the uber-boss started talking about how to get things in order.

Creation Plane Fractal 1
In a way, this opportunity has a delightful fractality to it. Fractality, is when a pattern repeats itself at smaller and smaller dimensions, repeating the same patterns and qualities infinitely within the whole.

In this very fractal case, the organization I work in shares a lot of my own qualities. It’s wildly diversified, almost to the point of incoherence, it’s got a lot of varied passions and abilities and strengths and weaknesses, none of which take very well to being told what to do. The various individuals charge into any challenge with all their experience and ability and passion, and, like me, there’s a ton of all that in vastly diverse abundance to manage and deal with and figure out, in the process of doing even relatively simple things. Like me, the organization tends to get mired in details and my co-workers tend to get very worked up over seemingly little things that may or may not matter — or, for that matter, be true.

Which all makes for a very fertile opportunity for me. Because now I may have the chance to bring the same sort of order to my organization that I have brought to my own life. It’s wild, how this happens. And now the full force of my attention is on making sure I don’t screw up the opportunity and end up worse off than when I started.

There’s always that danger. Always.

Neurons in the brainAt least my mission is clear, now. I need to get my act together — watertight and airtight and consistent — and keep my brain in the best working order of its life — and my life (which I suppose is one and the same). I need to up the ante and really focus on not only being normal, but being functionally precise, and not screwing up my chances at all this, by bad thinking processes and the residue of a past filled with screw-ups that had their logistical basis in fundamental neurological issues — issues which had nothing to do with my character, but were always interpreted as being due to some fundamental flaw in me, versus, the way my brain is wired together. All my life, as long as I can remember, I’ve hit snags along the way that were interpreted — by me and by others — as being due to fundamental flaws in my moral fiber. Only in the past couple of years, have I realized that the problem is not with my soul, but with my brain.

And now I have to re-train myself to think about my abilities and inclinations in terms of machinery. Wiring. Construction. Dendrites and neurons and synapses and axons. Not sin and soullessness. (Granted, there are plenty of sinners and soulless bastards running around out there, but I’ve counted myself among them for way too long, and it’s got to stop.)

Rewiring my own self-perceptions is taking some work. One day at a time, I’m getting myself accustomed to the idea that the problems I face are manageable and that I can — and will — overcome them with a combination of technique, tirelessness, tenacity, and as much finesse as I can muster.

So, I’m building myself some tools to do it. I’m drawing pictures of my situation. I’ve got an inventory of my strengths and relative weaknesses, from my neuropsych evaluation, which I have organized and ordered into graphics. I’ve broken down the different strengths I have and I’ve colored them green. I’ve broken down the different weakenesses and difficulties I have, and I’ve colored them red and orange, respectively. And I’m drawing lines between the strengths and weaknesses, identifying which strengths I can use to address which weaknesses, and giving myself visual reminders of where I’m strongest, and how I can apply those strengths to my difficulties and weaknesses.

It’s taking me some time, and the process I’m following tends to change and vary, between each “session” I spend with myself, figuring out where I have issues, and figuring out where I can apply my strengths. I spend a fair amount of time focusing on my difficulties, which can be a bit demoralizing, if I don’t put the emphasis on the solution, versus the problem. But when I keep my focus on the positives, I can “map” my strengths to my challenges in a way that keeps me on the good foot.

And that’s huge.

One of the things I’ve noticed about myself, is that if I let one or both of two things happen too often, I spin out of control and things start to head downhill:

  1. Letting myself get too tired
  2. Not self-assessing and tracking my issues on a regular basis

I’ve been handling No. 1 pretty aggressively, lately, with mixed success. But No. 2 has been a sticking point for me, as I’ve gotten pulled in a thousand different directions by upsurges in energy combined with lack of discipline, and I’ve stopped tracking my issues, for all intents and purposes, for the past couple of months. I guess I haven’t wanted to pay close attention to my issues, because I’m sick and tired of feeling defective, and I tend to run out of ideas for how to handle things better.

But now that’s got to change, as I’m finding it incresasingly difficult to effectively manage my life if I don’t address my issues, as they come up, and the stakes are all the higher for how well I manage my life. If I’m going to get this job, I’ve got to figure out how to sort things out on the inside of my head in a productive and positive way — and not let reluctance to face my issues keep me from making progress.

So, the painted carousel horse that is my issues tracking and management has once again circled around. It’s time for me to hop back on. I can’t avoid dealing with my stuff, if I’m going to operate at a high level. I’ve got to buck up, face facts, deal with my situation, and figure out pro-active ways of overcoming what gets in my way. I’m sure my neuropsych is going to be eager to help me do this. I just have to figure out the right way to approach this, and come up with a strategy and a plan for getting on track and keeping myself there.

Learning to read… again

One of the things I’ve been really struggling with, lately, is my uneven ability to read and understand. I’ve always been an avid reader, but until the past couple of years, I never really understood that what I had thought was “reading” was something a lot more irregular than looking at words and understanding what was being said with them. I’m running behind schedule this morning, but I do want to call out some things I need to focus on — as much for my own sake, as for this blog’s.

I’m actually in a position, right now, where I may be able to change the job I’m in  — for something better that I’ve been wanting to get into for quite some time. It’s a great opportunity, but I need to be able to read and understand and learn, if I’m going to do it. No two ways about it.

First, I have to realize just what my real reading abilities are. I am having a hell of a time at work, reading and understanding what I’m taking in. Sometimes, I’ll get 10 pages into some text, and realize that I stopped reading 3-4 pages back. My eyes continued to move across the page, but my attention was elsewhere. Or it was nowhere.

I also have a nasty tendency to forget what I’ve read before long. I may get something very clearly, one day, and then completely lose it, the next.

I need to figure out how to address this. And I need to figure out how to retain what I’ve read in ways that let me act on the material.

I need to get on with my day, but I’m going to give this more thought. I also need to look at some of the materials I have on hand, most notably from Give Back Orlando and the neurological information Dr. Schutz provides about how the brain can be affected by traumatic injury.

It’s all very exciting, but I have to say, I’m a bit unnerved by it. Well, I’ll figure something out. And either it will work, or it won’t.

Onward.