Spring is sprung, and it’s time to clean house

I’m not THIS bad off, but I could do better

That pretty much says it all. Spring is up on us, and with it comes a certain urgency with me to clean house — to clear out all the leftovers from the past year that have nothing to do with me, any more, and really put my current interests and affairs in order.

I am making the somewhat radical decision today, to not file additional federal paperwork on a project I started up last year. The paperwork would be all about registering the intellectual property of my project, and it would ensure that I have the right to sue other people for stealing my ideas.

In theory, that sounds like a good plan. It protects my rights and makes it possible for me to profit from my inventiveness and creativity.

However, in practice, it’s not very workable. Say a big company comes along and likes my idea and decides to steal it. I would need to launch a big-ass legal action on them and be willing to go through all the drama around lawyers and court appearances and filings and whatnot. I’ve had enough of courts in my past several years, and the last thing I want — even if it’s to protect my intellectual territory — is to spend any more time in court or around lawyers.

Not only would I need the right legal help, but I’d also need the time and energy to pursue all recourses, and God only knows how long that would take, and how much energy it would demand. I just don’t have that kind of bandwidth available, and the stress of it… well, that’s just not worth it to me.

I’d much rather have a good and settled life that has a good balance between challenging work and having enough time to blog on the side. That’s what I really want — to refocus my energy and attention on TBI recovery solutions, and make a positive difference in people’s lives.

So, that’s what I’m going to do. My study is chock-full of all kinds of materials — some of it junk, some of it gold. I have a ton of old bills lying around in stacks on my two desks, and I have a bunch of unopened junk mail that I thought might be interesting… but hasn’t appealed to me enough to want to open it. I’m feeling a bit blocked in, to tell the truth, and I need to free up some space for the things that matter most to me:

  • Sitting/breathing meditations
  • Stress inoculation / hardiness development (strength and endurance training in all aspects of my life)
  • Learning new things and relearning old things I lost
  • Sharing what I’ve learned so that others can benefit as well

I have been thinking long and hard about what I want to do with myself and my life, lately. I have really thought hard about my Big Project from last year, and whether I need to continue it. As much as I want to follow through as planned, upon closer examination, I now realize how much time and energy it has consumed from me, and what a source of anxiety and worry and stress it has been for me. I really learned a lot from it, but in the end, it’s really not what I want to be doing with my life, so I’m letting it go.

And when I consciously let it go in my mind, I feel this enormous rush of relief that opens up all sorts of other possibilities for me.

Like another more technical project I had started about 5 years ago, which I let go because I was having so much trouble with the work involved in making it happen. It was a good project, and I hated having to let it go, but my brain just wasn’t up to it.

My brain was too scattered, to easily distracted by all sorts of peripheral details that had nothing to do with what was actually going on. I had trouble interacting with other people, because my moods were so crazy, I would get pretty aggressive with folks, and my anxiety was out of control. It’s kind of tough to lead a project and present yourself well, when you’re a heap of frazzled nerves and you’ve got hair-trigger reactiveness. Plus, the technology I needed just wasn’t there, yet, and because of that, there were a ton of legal and federal regulation issues that were insurmountable hurdles for me, at that place and time in my life.

Now, though, the technology has matured, and I want to re-start that project. It was a good one, and the initial version of the program I wrote actually helped me with my recovery a great deal. So, I want to re-start that and take it to the next level. I have had many good ideas for how to simplify it, over the past years, and I’m ready to start again.

Which is good.

And which is why I need to clean my study. All these books and papers and bills and leftovers… There’s just so much … stuff … that I haven’t used in years, and I’m probably not going to use again. At the same time, buried under that stuff is a lot of material that I need to excavate and restart, because that is what matters most to me, and that’s where my passion lies.

Moving forward is really as much about figuring out what you don’t want to do, as it is about figuring out what you do want to do. And making the choices to NOT move forward with certain things, and to clear the decks of all those things, is a major step towards making some real progress.

Spring is in the air. And it’s time to make a new start. The winter has been long and grueling, and I’ve learned a lot of good lessons.

Now it’s time to put those lessons into action… and move forward with the best of what I have.

Onward….

 

Everything in its proper order

Everything has its place. It fits.

I’m taking the opportunity tonight to put my situation in order. I haven’t been feeling well for the past couple of weeks, but people are counting on me… so I am taking some extra time to get my ducks in a row before I travel again next week. I’m doing laundry, sewing a rip along the pocket of my good overcoat, and collecting all my gadgets for the road. I didn’t  take my tablet with me, last time I went, and I regretted it during all flights, both to and from.

I really don’t want to go on this next trip. I want to stay home and rest, not hob-nob and network. I want to go for long walks in the woods and contemplate abstract concepts, not wrangle with taxi drivers who don’t speak any English. I want to lie around the house in my sweats, read books, and cook good food to eat, not live out of a suitcase and have to steam the wrinkles out of my suits by hanging them on the door while I shower.

There are a million different things I would rather be doing, including feeling strong and rested and good about myself, instead of tired and weak and harried and frustrated over the concealed slowness that always threatens to derail my progress and expose me. Expose me.

I’m feeling pretty exposed, these days. My head hurts. A lot. And I haven’t been moving and exercising the way I should. I just don’t feel like it. I don’t want to slow down and mindfully “move into my day”. I just want to get up, eat a little something, and dash off to work. I want to get moving, I want to jump into the flow, not pause and concentrate on my motions, my form. I want to just go. Just do. Just roll on into what comes next.

Which is a positive sign, I suppose. It’s not just me wanting to escape what’s in my mind — although that is part of it. It’s also me realizing that there’s a whole world out there, and I want to be part of it.

If only I weren’t so tired.

But I do tend to be tired, so here’s my conundrum — hold back because I’m beat, and take care of myself so I feel better… or just keep on keepin’ on, and make the best of things as they come.

Better yet, I could decide not to choose. I could do both. I could look for balance.

Yes, balance. I’ve heard of that.

Let’s try balance.

Balance, plus a little bit more. Seeing as I’m back to reading again, I feel this intense need to read about and to study as much of life as I can get my hands on. Books by heretics. Books by brown-nosing sycophants. Books by partially talented (though who am I to categorize anyone?) writers who long to take wing and burst into song, and give it their all in the process. God, but I need to “un-couple” — you know, lift the linchpin out of the coupling that binds me to the train of boxcars that rolls through my ordinary life, and really — by all that’s right and fair and wrong and unfair — let myself slow. Or jump the tracks. Or simply break pace for even just a few seconds from the momentum of the day-to-day.

Drink bitter tea that will kill my cold before it gets hold of me. Eat spoons full of honey that take the bitter edge off my frustrating days. Lie down on the couch and look at the whorls of the ceiling while my spouse talks to their family about the latest kindred drama. Pick up a thick pen and feel the heft of it as I scrawl across a piece of paper.

This, all, is what makes it all worth it for me — so much in the details, so much to be felt, seen, thought, sensed, lived. So much in the cracks and corners of life — the sight of a wide open field under the morning sun, as I roll by on my way to work, the sound of one of my favorite songs that Pandora just happens to play, the creak of that janky strut in the back of my car… All of it adds up to one big — well, life.

And here I am, back to the balance idea.

Because it’s all there, you know. It’s all there for us to see, feel, think, sense, taste, touch, hear. To live. I can let the fatigue knock the stuffin’ out of me, as it almost did on my way home from work tonight. Tired… so very, very tired… and the darkness all around me streaked by the lights of cars and houses passing by…

Into the night… through the night… there is dark and there is light and there is everything in between. It all has its place, and my own place seems to be as much about getting out of my own way, as it is doing anything at all with what I’m given.

I’ve been given a lot. I’ve also lost a ton. I can read again. That is something. It’s really something indeed.

And for that, I am very grateful.

Onward.

Gotta get moving again

Ouch. The past short week with all the long hours — 5 a.m. till 7 p.m., most days — has been kicking the crap out of me, and I woke up this morning feeling like I’ve been beaten with a stick. It’s all those old sports injuries from my past, including a very sedentary lifestyle in my present. I do manage to get up and move, throughout the course of the day, but lately I’ve had to do work that has me sitting for long periods of time, just hunched over the keyboard, and that just plain sucks.

So, I’ve got to do something about it. I have been going to physical therapy to help with my neck and shoulder, which I injured a few months back and has not quite healed yet. I’ve learning some exercises to do, and I have a printout to follow. Now, I just need to put it where I can find it and remember it. I got it a couple of weeks ago, but it ended up on a pile underneath some other papers — out of sight, out of mind. No matter now often I tried to remember to dig it out and consult it, I kept forgetting.

That being said, I just retrieved it from my pile and it’s sitting here on the desk next to me. That’s an improvement already.

I also did some exercises this morning while I was making my breakfast — not the usual exercises 1-2-3-4-5-6-7-8-9-10 and repeat… that gets boring — but just moving around, loosening up, getting my bones cracking and my blood pumping. I get a little too staid with my exercises, first thing in the morning, and they don’t feel that great, so I back off. And then I end up doing nothing… Unless I’m doing chores around the house and yard, in which case I’m moving a lot, lifting and pushing and pulling and really testing myself.

Feast or famine. And then I end up with a lot of pain and stiffness and I get sedentary… and I end up like I am now — stiff and sore and one bit instance of ouch.

Ah, well. So it goes. At least I know I’m alive, right?

I’ve heard a lot of friends say that this is the year they get their act together, health-wise, and I’m in the same boat. I feel like the last few years were just all about survival — hunkering down and keeping a low profile and just soldiering through. Just staving off disaster, nothing more, nothing less.

This year, it feels like things are loosening up, all the upheaval in Ukraine and Venezuela notwithstanding. All kinds of crap is breaking loose all over the place, but in my little corner of the world, things are actually normalizing. Granted, I have come to detest my job all over again, and I can’t even begin to say how crazy it makes me to work with people who are arrogant, entitled, and utterly incompetent because their bosses have been letting them slide, lo these many years. It’s truly pathetic. There is a cost for coddling slackers. And I’m sick of paying someone else’s bills.

On the bright side, this motivates me all the more to step up and actively manage my own career and make some inroads where I can. I’m just going to keep steady with my own work and my own path, and let everyone else figure it out. Seriously, it’s not my job to win the hearts and minds of everyone around me. They can manage their own damn’ selves. I’ve got work to do, and I’m going to do it.

Now that I’m looking at my printout of exercises, it’s coming back to me… my physical therapist showed me some good stretches to do, and some of these I can do at my desk, as well as in the car while I’m driving. Or I can just step away from my desk for 10 minutes, every couple of hours, and do them. It actually wakes me up a bit, to stretch, and it frees up the blood flow and energy — gets everything “talking to each other” much better. So, it should help me in the course of my daily work.

Despite my bitching, the simple fact remains that people who can do difficult work get paid the big bucks. Those who can take on impossible challenges and deliver, are the ones who are most valued in a large company, and rather than dreading and avoiding challenges like the ones I face each day, I should be welcoming them as a chance to grow and improve. There are a number of things I really dislike about this job — the workforce, the arrogance of management, the overwork and underpay, as well as the travel which destroys my quality of life. But if I can work around those things and focus on the parts of it that I want to really emphasize, then I can make this work for myself.

Having to soldier through all the muck and weeds is incredibly taxing, but that’s just part of living and working. I need to just suck it up and get moving, make the most of the situation where I find myself, and really focus on the gratitude for what I do have.

And take care of my health. I’m going to see my doctor today about my headaches. I suspect they’re just tension headaches, but it could be something else. And they come on when I exercise — I can start out feeling pretty decent (headache at a 2/10). Then I’ll start to exercise, and when my heart rate goes up, my headache kicks in harder — going up to a 6 or a 7 out of 10. It makes it a little difficult to get excited about exercising. I thought it would just go away over time, but it hasn’t. And so I need to check with my doctor.

This coming June, it will be four years since I started at this company. It has been a wild ride. I’m not sure how much longer I should stay, actually. And later this year, when I have revised my resume and goals and objectives, and I am more clear about the new direction I want to go in, I can start looking. Right now, it makes no sense for me to move. I just need to stay focused on what I am doing and stay true to myself.

And not let others hold me down or cloud my judgment. I’m surrounded by people whose judgment doesn’t seem to be that sound. I can’t let that affect me and blur my own vision.

So, yeah. Onward.

 

 

Finding progress after TBI

It’s there if I look for it

It’s been a real roller-coaster of a year, thus far. Work changes, home life changes, and trying to “reboot” my life for the better.

I’ve been noticing that I get pretty FIXated on what needs to be “fixed” in my life — what’s wrong, what’s going worse than I want it to, what needs to be addressed so that I can relax.

Relax… hm. There’s an idea.

But here’s the thing — a lot of what I think is “wrong” is going to change on its own, so I don’t actually need to do anything about it. A lot of what I really struggle with isn’t going to last. The job situation changes, as people come and go and the company decides to do something completely different. Family situations change, as people get sick and get better and learn their lessons and talk things through. Everyday life situations change, too. It’s just the nature of things.

So, getting too caught up in fixing something in my life that’s going to change, eventually, anyway, doesn’t actually make a lot of sense.

What makes more sense, is to settle into my own life, my own pace, my own way of thinking and doing things… figure out what I want to do with myself in my life… and stay the course as I get there.

All around me, things are crazy. People are genuinely insane, and they’re not making much attempt to hide it, these days. I can’t even look at the news these days, because all that’s there is drama and pain and blood and explosions. There’s no news of anything really good going on on mainstream media. Seriously, there’s not.

So, I have to find a different way — in the outside world and internally as well.

There’s Good News Network, for example, which shows all the good things that are happening in the world that don’t get major media coverage. There’s Good News on the Huffington Post, and then there’s Happy News, which is real news of happy things.

Internally, I need to keep my spirits up, as well, and really concentrate on the good that’s happening in my life. I tend to be so oriented towards addressing issues, finding what’s wrong and fixing it, that I neglect the good when it’s there. And I end up feeling artificially bad about so much, when I could feel genuinely good about so much more.

The fact of the matter is, I can now live my life with 1000% more sense of capability, than I could, just a few years ago. The fact of the matter is, even in the face of really difficult conditions, I can function — and function very well. The fact of the matter is, I have learned how to manage my temper and control my anger outbursts. The fact of the matter is, people who used to be afraid of me, no longer are. I have a better relationship with my family than I ever have — I even spent an hour on the phone with one of my siblings on Sunday night, talking in ways we have rarely talked — nothing that heavy, just talking for real about our lives and how we feel about them.

So much in my life has improved over the past years of dealing with my TBI issues. So much has settled itself, or I’ve found ways of handling it all with more capability than I thought I could. I have done some pretty amazing work, and I need to remember that — maybe make up a record book of some kind to remind myself of how far I’ve come, and what I’ve accomplished.

Because I forget. I forget and I lose sight of those things. My memory is not my best friend, when it comes to tracking where I’m at and how far I’ve come. I’m pretty caught up in the everyday, so I tend to focus on that.

But there’s more to life than the present instant that needs to be “dealt with”. There’s a whole world of past and future that’s looking for my recollection and discovery. And the bottom line is, no matter how much I may doubt myself from day to day, I have a whole lot of experience overcoming substantial roadblocks, and I can be pretty proud of that. I need to pace myself… and remember that even overcoming roadblocks, as necessary and encouraging as that can be, does take a lot of energy. And when I get depleted, I get depressed — for no other reason than that I’m depleted and I need to recharge my batteries. I get so tired, I forget that the very reason I’m tired, is because I’ve been doing really good work — and a lot of it — all day.

So, as much as I think about “making” progress in the course of my daily life, I also need to remember to find progress — steps I’ve already completed (and successfully at that), which show me I’m far more capable and resourceful than I give myself credit for.

I can do better about giving myself a rest and letting myself take a break, so I can come back stronger than ever. And I can remember — whether through a note to myself or a sign on the refrigerator — that I actually am making progress, it just seems like I’m not, because it’s lost in the haze of my fatigue and all my future plans.

Progress — it’s right in front of me, if I but look for it.

Finding hope and making meaning after brain injury

Spring… time for new beginnings…

My day is off to a pretty good start. Last night I got in bed early and probably got between 7-8 hours of sleep, which is a record for the past week or so. Long-distance travel really does a job on me, especially when it’s for work and I have to be “on” the whole time. Getting back to some semblance of normalcy has been a big struggle for me, which I really don’t care for. I like my routine. I like my cadence. I like knowing where I’m going to be, and when.

I hate to wing it. I hate to “fudge” times and dates and whatnot. It’s just more details I have to keep track of, which is a terrible waste of time, especially since I tend to forget those details and then I end up looking either like an idiot or a poseur, or both — none of it is good.

Anyway, in search of something better and more hopeful, and in honor of being back on my home turf and back in my own daily routine, I spent my time this morning exercising (first thing when I got up), and then having a good breakfast, and then sitting down to read and study a bit. I’m reading some interesting work by Howard Gardner, who came up with the “multiple intelligences” theory that saved my ass back in the 80′s. All of a sudden, my own version of intelligence, which didn’t match what everyone else expected, wasn’t so bad after all. So, thank you Dr. Gardner, for that.

I also did some reading in the sizeable collection of PDFs about neuroscience and TBI that I’ve collected over the years. I unearthed this little gem: The Importance of the Patient’s Subjective Experience in Stroke Rehabilitation (you can download it by clicking this link), and taking a closer look. I think I read this, back when I downloaded it a year or two ago, but I honestly don’t remember. Heck, I might have blogged about it… but again, I don’t recall. (I searched my blog for the title, but I didn’t find anything, so it could be this is my first mention of it.)

In any case, my memory notwithstanding, it was a good read. The things that are discussed are just as appropriate to traumatic brain injury as they are to stroke/acquired brain injury. I highly recommend it to anyone who has experienced either,  as well as those who live/work with them.

The basic gist of the article is that in brain injury rehab, survivors can be severely impacted by their own subjective experience of their injury — they can take it hard and it can really knock their feet out from under them, because (among other things) their sense of self and sense of who they are/should be is so disrupted — sometimes beyond their own comprehension. One of the hallmarks of brain injury, be it TBI or stroke, is a tendency to not have a clear view of where you stand on things, what your abilities and limitations are, and to not be able to express your feelings very clearly about what seems to be going on with you.

As Prigatano says:

Many patients with brain dysfunction are more confused than meets the eye. They simply do not know how to approach the problems they have experienced nor how to discuss the feelings they have that are associated with their restricted functional capacities. They do not know how to deal with interpersonal relationships in light of their … condition.

Been there. Frequently. It’s not fun. And it’s exhausting to have to cover it up and compensate for it all the time.

The thing is, this can lead to a real slowdown in one’s willingness to engage with the rehab process, and it can undercut your recovery. When you’re uncertain and stressed and you can’t see your way through something, it can lead to a “catastrophic response”, which is where everything feels like it’s collapsing in on you, and you’re totally screwed, and there is no way in hell you’re ever going to find your way out of this mess. So, you just quit. You give up. You can’t move forward, back, or anywhere. You’re just stuck. Catastrophe. What seems like the end of the world, can come to be like it, because we just quit.

And the bigger problem that actually contributes to this phenomenon, is that brain injury rehab people (or others who are helping with our recovery, including friends and loved-ones) don’t always take the personal experience into account. They focus on the acute issues, they focus on functionality, or they get into the exercises, drills, whatever, to help restore functionality to the person… without actually addressing the impact this has had on the individual themself.

So, overlooking that aspect of the experience can contribute to a slowdown in progress. And not only does the survivor see less advancement in their abilities, but their self-image and ability to participate in life is even further impacted. It’s a vicious cycle, which has its roots in overlooking the personal impact that a loss of functionality and change in personality has on the survivor.

I’ve seen that myself with my own neuropsych. They tend to try to steer me away from dwelling too much on the difficulties I’m having, and get me to focus on the positives. Rightly so. I can quickly become mired in my own despair, because I can’t see my way out of things and I have a catastrophic response where I just quit talking, quit responding, quit everything. It’s too much. How many minutes (maybe hours) I’ve spent with my neuropsych, just sitting there shut down, not wanting to move or talk or respond or communicate because I didn’t know where to start… I can’t even count them. At the same time, though, not having someone who “is supposed to understand” acknowledge the difficulties you’re having, can really put a damper on your enthusiasm. It’s only in the past couple of months that they’ve even mentioned some sort of empathy for my situation. I get the “tough love” thing — yeah, I should keep my spirits up and look on the bright side instead of indulging my morbidity and paranoia… at the same time, though, it would be nice if I could at least get some acknowledgement from them that I’m not crazy, being concerned about some of this stuff I experience. And their reluctance to “indulge” me by acknowledging the down-sides of my situation, has really stymied my work with them at times.

Now, on the other hand, when the subjective personal experience of the survivor is addressed, it can open doors to further improvements and developments. Frankly, it’s a relief, to hear someone say you’re not crazy for feeling antsy and nuts and jumpy on a sunny day after a long night without much sleep. It’s a relief to (for once) hear someone talk frankly about your temper flare-ups and not make them into a federal case, like everyone else does. And it really takes the pressure off, when someone acknowledges that you feel how you feel, even if there’s not a lot of “reason” behind those feelings.

Here’s a great case study / example story excerpted from Prigatano paper, as recounted by the author:

… Years ago, a middle-aged accountant suffered a right hemisphere stroke with the consequential effects of a left hemiparesis with mild neglect. He experienced pathological crying where he suddenly would burst into tears, even though he was not sad or unhappy.

He was referred to me for neuropsychological rehabilitation to help him with his pathological crying. In helping him do so, I asked him to focus on his shoe, a neutral object, any time he had the urge to cry. When he did this, it undercut his pathological crying response. He was so appreciative that he began to talk to me in more detail about other concerns in his life. He emphasized that throughout his life he had been a good provider and that he and his wife had enjoyed a healthy sexual relationship. He noted that after his stroke, it was hard for him to get an erection; he was embarrassed over this issue and did not know how to approach his wife. He often would avoid having contact with her for fear that he would not be able to perform sexually. His wife expressed that this was not a major concern or issue for her, but he felt differently. The question was how to help him.

We talked about what he had done in the past to please his wife. He indicated that he always had a good sense of humor and that he always was romantic in his manner of interacting with her. We then talked about what he might do symbolically that would reflect his commitment to her and his desire to continue to make her laugh and to be sensitive to her from a romantic point of view. We struck upon the idea that he could purchase or write 365 love notes that he could give to her throughout the course of a year. He was ecstatic with this idea and immediately went about accomplishing this task. Each morning when his wife took a shower, he placed one love note underneath her pillow. When she found it, she often smiled, and there was a sense of comfort between the 2 of them. One might expect that over several weeks and months this would become fairly routine and boring, but his wife stated that she always appreciated the fact that he took the time and the energy to prepare these notes. It was the sense that he was giving back to the relationship within the context of what he could give that was crucial to maintaining their love relationship. He did this willingly as a reflection of his own individuality. It was something productive, something he produced that was useful to him and to another (his wife). These 3 experiences – preparing notes for his wife (a work activity), giving them to her on a daily basis as a sign of his intense affection (love), and finding the activity fun or enjoyable (play) – had a profound effect in reducing his sense of despair and in maintaining meaning in his life in the face of a rather devastating stroke.

I think that’s pretty cool. Even though the man’s wife wasn’t bothered by how he had been impacted by the stroke, it mattered to him. And they found a way to work around it. Dr. Prigatano didn’t just dismiss the man’s concerns, he worked with him to find a way to “make up” for what he felt he’d lost. And that counted for something with both the man and his wife.

It counted, because it added meaning and purpose to the man’s life. And that’s where TBI can really hit you hard — in the face of unexpected and inexplicable (and sometimes unrecognizable — until too late) difficulties, you can rapidly learn to feel helpless and victimized by your circumstances. And when everyone around you is telling you, “You look fine!” and wondering (sometimes out loud and sometimes not very sympathetically) why you continue to struggle with such simple things, it does absolutely nothing to help you lift yourself out of a sense of helplessness and futility.

Then life can become meaningless. It can become a chore. It can get depressing. And it can just suck to be alive.

It’s bad enough that all of a sudden you have all this sh*t you have to contend with, but then you’re alone with your experiences. No one is validating that what you’ve got going on is actually pretty tough to handle, no one even acknowledges that what you’re up against is pretty hard to take, each and every day… and absolutely no one is recognizing that the things you get right are massive victories, in the face of your perplexing situation.

In the face of this all, what to do? I can’t speak for anyone else, but for myself, I need to seek out meaning and purpose in my life. I need to identify the things that matter most to me, and build my life around those things, those ideals, those concepts, so that I feel that I’m working towards something important that contributes to society as a whole.

This blog is part of that work, just sharing the stories from my life and information I receive, so that others might benefit from it.

My relationships with my spouse and my co-workers are also a big part of it. And my career. And my home. And the things I read and study and digest and put into action in the course of my everyday. I need to stay interested. I need to stay engaged. Even if it’s just in my mind, I need to at least have some sense that I’m connected with a Higher Purpose.

All those things matter to me. They add meaning to my life. And they satisfy my need for work, love, and play. I quote again from Prigatano:

… in our Western culture, there are 3 symbols that help individuals establish meaning in life. Those symbols are work, love, and play.

The symbol of work is especially important in American culture. We often identify ourselves by our occupation, the type of work we do, and our pride in what we have accomplished in our work. Work by its nature puts us in contact with others, which allows human relationships to form and develop. Broadly speaking, work is the symbol of being productive, that is, producing a product or service that is meaningful to one’s self and to others. No matter what the person’s level of disability or impairment, it is important to help each individual to be productive in some capacity. When we do this, we reinstitute a partial sense of normality in their lives.

The second symbol, which is perhaps universally important, is the need to establish a bond with another. Love relationships are complicated because they involve the psychological make-up of 2 individuals who experience a level of intimacy with one another that they do not experience with anyone else. No one has come up with a totally satisfactory definition of love, but from my perspective it can be defined as a relationship in which the other person’s sense of well-being is as important as one’s own sense of well-being. When this is the case, a variety of sacrifices are made to ensure the other is doing well in life. After brain injury, individuals often do not have the desire to attend to the needs, especially the emotional needs, of others. This is a mistake. It is crucial for individuals to emotionally give back to others in their lives to reestablish a sense of bonding and connectedness, which is very important to their sense of well-being.

The third symbol, which is perhaps not as universally agreed upon, is the symbol of play. Here play does not mean recreation. It means the capacity to enter fantasy and to think and feel and do whatever one wishes to do. At first glance, this may be viewed as a purely narcissistic venture. It is not. When individuals are true to themselves and live their lives according to what they believe is in their best interest and follows their natural interest plans, they ultimately do better. Many individuals who have not followed this course find themselves depressed or leaving their work lives early because their work no longer provides a sense of satisfaction, despite whatever economic rewards it may produce.

Again, helping individuals identify with symbols that reflect their unique phenomenological state and what they wish to do in life becomes crucial in stroke rehabilitation and the broader field of brain injury rehabilitation.

I think this is all very true. When you don’t have a connection with anything that adds meaning to your life, and you feel like just a lump of flesh-covered bones sitting around with no redeeming qualities or abilities, there’s not much incentive to do the kind of hard, hard, arduous work that brain injury requires of us.

I have said it before, and I’ll say it again — recovering from TBI is hard work, and if you can’t find it in yourself to really apply yourself and work at it, you may find yourself in increasingly difficult circumstances as the years pass. TBI doesn’t always go away. Sometimes it seems to, but sometimes it stays with us quite noticeably for the rest of our born days… even getting worse, if we don’t make a concerted effort to make it better… to make ourselves better.

So, we have to have some meaning, some hope, some sense of optimism in our lives, to make it through. I know folks who have sustained brain injuries whose outlook on life has gotten worse over time, and their outcomes are not that peachy. In one case, the one thing that saved them is that they have a spouse who has a good job and is the kind of person who will go out of their way for them — for anyone really — to help, for the sake of helping. If they were on their own, they’d be in pretty dire straits, I believe.

Yes, keeping your spirits up and staying motivated are critical for a quality TBI recovery. I DO say “recovery” because despite the loss of some capacities, we can still recover our dignity, our sense of purpose, our functionality, our lives. We don’t have to just give in to the inevitable loss of everything that once mattered to us, thanks to TBI. No way, no how. There is far more to us than any of us can guess, and the main reason many of us founder and flail, is because we just can’t imagine that we might be bigger and better than anything we can conceive.

It’s one thing when your brain is injured, but the injury to the human spirit is even more devastating.

Well, speaking of being bigger and better than anything we can conceive, I’m going to sign off now and get on with my day. I have a lot of little chores to do, before the weekend is up, and I have a lot of thinking to do. I recently discovered (in my treasure trove of TBI research PDFs) a paper describing what kind of rehab activities my neuropsych has apparently been conducting with me. On the surface, it has seemed like I was just showing up, chatting about this-n-that, and then going home to have supper and go to sleep. But apparently, there’s a lot more going on in those sessions than I had guessed. It’s pretty exciting, because now a lot of stuff that I’d just been going with on faith is actually making a lot of great sense. Especially in light of my long history of TBIs.

I’ll share more later, when I manage to work my way through the paper. I started on it yesterday, but I was still so baked from my trip, that I had a hard time reading more than three sentences, before I had to go back and re-read what I’d just reviewed. I gave that up after stumbling and struggling through a few pages. I decided to wait till I was fresh and halfway cognizant, before I dug in again.

Damn - the troubles with reading are troublesome! It’s one of the hardest things for me to take about my situation.  Self-image and all that…

But enough self-pity. It’s time to get crackin’ — go about my business as an apparently normal person… which compared to how I was six years ago, is nothing short of a miracle. Off I go, to revel in my normalcy…

Onward.

What else…?

A new day is dawning – what else is possible?

Time has really gotten away from me, this morning. I was up early with my spouse – who was up late (really late) – and we got to talking, which is good. I have a doctor’s appointment in another hour and a half, and I need to get ready to go. And here I thought I had at least another hour. Funny, how the time flies when I go online.

Anyway, it’s 12/21/12 – the big day, according to a lot of folks. Some go on and on about the end of the world, but what I’ve heard from more folks is that it’s actually the beginning of the next one. A new world. A new start. Not right away – for what really changes in an instant, if it’s truly going to last? But starting now, moving gradually towards What’s Next.

Now, I am pretty much of an agnostic, when it comes to this sort of stuff. Maybe it’s true, maybe it’s not. Who the heck knows? But it is a way I like to think about things. And even if there’s nothing special about this day, other than it’s the marker of when the days start to get longer (and people Up North get closer to seeing some sunlight again), and that we have attached certain numbers to it, I can certainly choose to do with it what I like.

Just like I can every single day.

If I want numbers to inspire me, I can look at the clock — I can decide at 12:12 or 12:21, each and every day, to start fresh – hit the proverbial reset button. Or I can set my alarm for 3:33 each afternoon and treat that as a “reset”. Probably not a bad idea, since my daily clock seems to wind down around 12 noon each day, and then pick up each afternoon around 3:30 or so.

Numbers… Yeah, numbers. I have always played games with them, and I find them fascinating. When I’m driving long distances and I get tired, I play games with the numbered mile markers beside the highway, and that perks me up right away. Whatever does it for you to make your day a little more interesting, a little less stressed, a little more enjoyable… well, that’s alright by me.

And whatever it takes to get our heads out of a terrible space, is fine with me — provided it’s not killing brain cells or doing harm to others (which a lot of people find enjoyable, sadly). My argument about all the Doomsday stuff is that We Just Don’t Know. We can think we know, we can suppose to know, but doomsday-sayers have been in that business for as long as humans have walked the earth. And magically, we’re still here.

The only impact they seem to have is making us feel like crap, while we’re waiting for something that isn’t going to happen.

Now, I’m not going to get into a theological debate over this — I’m just saying that for all the people who have staked their reputations on THE END being just around the corner, how many of them do you remember? Few, if any. Because when they’re proven wrong, as they so often are, they just fade from view — and go back to their work doing whatever they were doing before. And all we’re left with is a bad taste in our mouths and a little more stress to drag us down.

So, on this momentous day, when certain people are celebrating the end of the old and the beginning of the new, I look to the day myself, and I wonder what else I can do that will improve my life and the lives of those around me. Whatever the date, whatever the occasion, it’s a good thing to do in any case. I think about the ways I can turn things around that I’m not happy about… including my doctor’s impression of me as a “risk taker” that I am very uncomfortable with. I shall be having a conversation with them in another couple of hours, and I’m writing it all down ahead of time, so I don’t lose my train of thought. I can turn things around at work by really focusing on what’s in front of me, not getting distracted, and doing a better job of following up. I can improve my experience overall, by improving the skills that make me feel like the person I really am with the capabilities I really have. And I can find other like-minded individuals who are seeking to make the same kinds of positive changes — both personally and on the larger social and cultural stage.

For some reason, this time really feels like a turning point for me. I feel pretty energized by the possibilities… and the thing that makes me feel even more energized, is hearing so many people talk about new beginnings, where a week or so ago, they were talking about drudgery and sadness and misfortune and all that. People are stepping up to take more responsibility for their lives and their situations, and that’s really exciting for me. Because I’ve always known it was possible — and now with this “new era” dawning, more people are starting to agree with me.

I guess that’s the thing that excites me the most about this Winter Solstice — that other people are realizing the same thing I’ve know for many, many years: that anything is possible, if we put our minds and hearts to it, and we don’t accept the same-old-same-old as a given.

Truly, it is a new day. And I’m so happy others are seeing it, too. :)

Seeing the light ahead

I just talked to a friend of mine who is totally stoked about some self-improvement work they’re going to be doing in about a month or so. They are so excited, it’s wild to see — this is someone who has seemed to me to be almost clinically depressed. They just can’t seem to get their act together, and they always have an excuse for why things didn’t work out for them. Their energy tends to be low, unless there are lots of people around to lift their spirits.

Then, they come across this intensive workshop that’s being held for several days in a row, a couple of states away… it’s expensive, and the don’t really have the money… but they’ve heard incredible things about it from friends who once did it, and they’re doing what they can to get the money together and go.

They’re going. They’re just going. They’re not sure how — they need to get plane tickets and find transportation to the venue from the airport… they have mobility issues, so it’s not easy for them to hoof it around… and they’re starting to have second thoughts and pretty intense dreams… but they’re going.

They’ve committed. They’re going to make it happen. No matter what.

And the change in them is pretty amazing. Because this person who tends to be a bit like Eyore in Winnie the Pooh, is all of a sudden full of life and hope. They can see the light ahead, and for the first time in a long time, they can imagine a future where they don’t have to be held back by their demons, their ghosts, and the fears that constantly dog them.

And it’s a great way to close out the week. Because just hearing how happy and how determined — and how realistic — they are, really lifts my own spirits.

Good stuff.

Hard stuff, too. I’m sure they’re going to go through some stuff between now and then… but they’re committed. They’re locked on. And they’re going to fulfill a dream – to take this workshop and see it through.

It really is exciting when I come across people who are totally about making themselves and their lives and the lives of others better.

Again, good stuff.

Like The Better Man Project I just discovered.

Gotta run – supper’s on.

Be well, y’all.

A whole new life, a whole new species

Keep moving… you cannot help but change

I’ve been having some interesting times, lately – and not in the sense of the Chinese curse about “living in interesting times”. I seem to have turned a corner of sorts, seemingly out of the blue… it’s like things have just focused for me and centered, and even though I don’t know the specifics of what I’m going to be doing about specific things, I have this certainty that things are going to roll out the way they should, and I will find a way to roll with them.

The vacation I took had a lot to do with it, as did the insane 3-4 weeks leading up to it. For about a month, I was all-out, just flat-out working-working-working, without distraction, without confusion. That focus came from a sort of iffy place — basically, I knew I was screwed. That much was plain. The work that I’d been doing for the past year came under a huge amount of scrutiny at work, and people decided it wasn’t what they wanted — even though they didn’t bother asking me about the specifics, they loaded me up with a ton of other work, and they just sort of shoved it all off on me like it was a pain and a hindrance. For two years, they don’t pay any attention to me, don’t listen when I give them updates, and they just dismiss this part of the equation… until suddenly it matters.

And it’s not what they wanted.

And they end up looking bad.

And it’s all my fault.

Hm. Okay, then, time to move. Time to groove. Time to hustle… right on out of there.

And I realize now that a big part of my stress has been the dynamics at work, where the boss is weak, the boss’es boss is weak, the uber-boss is a disorganized, impulsive, attention-deficient bully who’s also a bit psycho — and aggressive to boot… and all the while, the people who are running the show are actually thousands of miles away in a different time zone and a different world entirely. If sh*t rolls downhill, I ended up rolling around in it like a stressed-out pig. And everything I did to try to turn things around with my direct line of command just didn’t work out. On top of it, the people my boss reports to don’t really like me very much. They wouldn’t. They’re most comfortable with 20-somethings who don’t know enough to call them on their games. And that’s just not me.

So, while I was working my ass off before vacation, shoving everything off my plate except for those three massive projects that just had to get done, I had plenty of time to shake it off and just focus on the work at hand. I had plenty of time to get used to the idea that no matter what I did, no matter how hard I worked, no matter how much effort I put into my job, the fact that people above me don’t like me and aren’t comfortable around me is a bit of a gating factor — so long as I let it be, that is.

And it occurred to me that part of what was making me nuts and cutting into my happiness with my work and my focus and my energy levels, was my mindset that I was ever going to be able to get those folks to like me, to be able to sit comfortably in a room with me and have a conversation with me, to see the value and the reasons behind what I do… that they were ever going to appreciate and see eye-to-eye with me. It just wasn’t going to happen. And I was wasting a whole lot of time chasing something that was never going to be attainable… like I was crawling across the desert towards an “oasis” that turned out to be a mirage.

“Screw it,” I decided. I realized that I lost all respect for the people I report to, a long time ago. Nice people, but weak… poseurs. And pandering. And a little bit dangerous that way. They’ll say what ever they need to say to get along with their higher-ups and damn the truth of the matter. These kinds of people not only make life hard for their co-workers, but also for their bosses by not telling them the whole truth and actually fixing sh*t instead of covering it up and putting lipstick on the pig. All I wanted to do was get the job done and get it done right. I wasn’t bending over backwards to make anybody happy, I wasn’t going out of my way to soften things and paint them in the right shades of mauve. Screw it. I was just going to get the job done, and never mind what everybody had to say about it.

That freed up a lot of energy, actually. And I felt a whole lot better when I just let that sh*t go.

Then I went on vacation. I didn’t check my email, I didn’t pay any attention to work, I didn’t do squat that had anything to do with the workplace. I took time to myself. And I let it go. I just f*cking let it go. All that drama would be there when I got back. What was the point in getting all worked up over everything? No point at all, especially considering that I wasn’t going to “win” with these losers, anyway. So, I had a vacation. For the first time in years. And I came back feeling human and ready to rumble again — on my terms.

And that’s exactly what I’ve been doing — rumbling on my terms. And it’s been great. Seriously. My performance has been great. I have gotten so much done, and I’ve turned so much around in the space of a couple of weeks, my head’s spinning. I’ve got a lot of catching up to do, but I’m doing it. One step at a time. One day at a time. One task at a time. I am getting into a great routine, a great roll — exercising again, but in a smart way… taking time away from my desk to decompress and then come back in to the thick of things… making up for lost time… and getting sharper all the time.

How could I not? I’m moving. I’m taking time out to think and to get square away. I’m living. And living to the best of my ability has turned out to be incredibly positive, incredibly helpful, incredibly healing on a number of different levels. I can definitely tell that my thought processes are not as fluid as they were before my last TBI, but by God, I’ve got something else in place that is working – and it’s working better every day that I practice it.

See, that’s the thing – the practice. It . is . so . important. Hands down, it is the one thing that has turned my life around — practice, practice, and more practice. Getting a goal in mind, blocking everything else out, going after that goal over-and-over-and-over-again, till I have reached it. Not giving up. Not quitting. Not accepting temporary setbacks as a sign of true failure. So long as I just keep at it, there can be no failure. Because I’m not done yet. There’s a line from the trailer of the movie “The Best Exotic Marigold Hotel”  where someone says “Everything will be alright in the end. If it’s not alright, it’s not the end.”

That’s pretty much where I am, these days. Keeping on keeping on, till I get where I’m going.

And that’s a relatively new thing for me. One of the things that this TBI business has taught me, is how to stick with something, even when I appear to fail along the way. When I was a kid growing up, people gave up on me all the time. If I didn’t perform up to their standards or expectations right out of the gate, that was it. I was done. I was fortunate to have some native intelligence that let me quickly figure some things out — and also mimic others who were doing what they were doing — so I could at least pass some of their tests. But when it came to temporary setbacks, people would get very frustrated with me and wouldn’t work with me to figure things out. They just gave up on me because my performance was so erratic (and they thought it was because I wasn’t trying hard enough), and I never had anyone really talk things through with me and work it through.

Throughout my life, I’ve had a lot of experiences where I’ve been able to figure some things out pretty quickly and also mimic the performance of others who had things “down”, and get by pretty well in most things. I reached a certain level of proficiency, and things were looking pretty damn’ good. I had stock options in a very big corporation where I worked, and I was about 18 months away from being able to cash out, pay off my house, get out of debt, and really free myself up in general.

Then I fell and smashed my head on some stairs, and everything got scrambled. All of a sudden, things stopped making sense to me. And over the next six months, they just fell apart. Just . fell . apart.

And it seemed like it was going to be that way forever. The confidence about skills that I was so comfortable with before… gone. Not comfortable anymore. The skills were still there, but the confidence was gone. The abilities I had to self-regulate and keep a lid on things when times got tight… gone. It was like someone took a deck of cards and flipped them all into the air, and then I was expected to compete in a poker tournament in Vegas. Not happening.

To say that this has been difficult would be an understatement. TBI… concussion… brain injury… whatever you want to call it, it’s a bitch. A stark raving slovering bitch.

But you know what? All those cards — even though they were scattered all over the place — they could be picked up again, and I could get back a whole lot of what I’d lost. It has been a long and torturous road, and this Thanksgiving it will be 8 years since that fall. I have either lost or almost lost so f*cking much that mattered to me in the past, and I’ve had to work my ass off to get back to a level that’s not even close to where I was before. But with time, I am all but positive that I am going to get back not only to that former level, but also take it up a notch. Because now I know what it’s like to lose so much. Now I know what it’s like to get knocked down so hard, and have to work my way back.

And most importantly of all, I am learning how to hang in there and keep fighting, even when things are so hard against me – like this job situation, the political dramas, the tension and hostile dynamics at work, and the nagging doubts and lack of self-confidence that just eats away at me, if I let it.

Sometimes the only way we can learn how to fly, is if we get the legs knocked out from under us. Imagine what would happen to the ostriches, if they couldn’t use their legs to escape predators… a lot of them would die, sure, but others would probably learn how to fly, and a whole new species would emerge.

I guess that’s what I’m doing with my life — creating a whole new species, a whole new way of living and operating. It’s not perfect, but the way I was before wasn’t perfect, either. When I get honest about that — really honest — I know that there were a lot of things that needed improvement before, but because they seemed to be working fairly well (I had money in the bank and a job and a home) I had no incentive to change them.

Only when I got injured..  and then things got so bad and the pain got so unbearable… did I take a wholesale look at my life and find the things that hadn’t actually been working for a long time, but I could let slide because I was functioning acceptably overall.

To say that my life has changed, would be an understatement. It has totally changed into something else, something I never would have expected myself to be living — more settled, more deliberate, more focused, and more social than ever, ever, ever in my life. Amazing. But that didn’t start to change until things broke down so badly that I had no choice but to change.

That’s how it usually goes with us human beings, is it not? So long as we can “get by” we figure we’re doing pretty well. We like to take it easy. We like to not push so hard. We like to chill. We don’t like to take huge risks, unless it’s exciting for us and we’re into that sort of thing. On the whole, we’re creatures of leisure, and we like it like that.

Unless something comes along and kicks us in the ass so hard, it pushes us off the tracks we were stuck in. Something pretty significant needs to blow us out of the rut we groove for ourselves in our lives. And sometimes we don’t survive the explosion. But sometimes we do. In fact, I think we’re a lot more resilient than we give ourselves credit for. When we can get past the initial anxiety and worry and intimidation… things change.

But speaking of change, I’ve got to get on with my day. I’ve got a lot to do, and I’ve got my schedule cleared to do it. I was up early, so I hope to take a nap later, to keep myself going. If I work this right, I’ll be totally wiped out by 2 p.m., when I’ll lie down for a 30-minute nap… then get up and go at it again.

Practice, practice, practice. Build some more habits. Deepen the grooves. Get those neurons firing — so frequently in the same way that they cannot help but create new patterns, new abilities, new ways of living and being and seeing and understanding.

It’s a whole new day, and another chance to strengthen the new.

Onward.

Pick your own experience

Which side will you look on?

Something pretty important has become increasingly apparent to me, in the past week or so – namely, that I can choose my own experience in life. No matter what is happening, I can choose to think and feel any way that I want to think and feel about just about anything.

I don’t have to fixate on one side of things, and I don’t need to get stuck in only one outlook.

Everything has more than one side to it. Everything. From the most terrible events to the most fortunate experiences, if you look hard enough, you can find whatever you need there, to feel however you want about it.

Life is literally like a cut stone – it has many different facets that catch the light in different ways, and depending on which side you look at, it can be awful or it can be wonderful… or any combination in between. Usually it’s that.

The challenge is to not get caught up in what’s obvious on the surface — that something is GOOD or BAD, but just that something… IS. The other challenge is to not completely disregard the different qualities of a certain experience, because you’re invested in feeling a certain way about them.

Things like injury and hurt and harm aren’t the kinds of things you’d want to feel great about. That’s kind of like encouraging them and making them okay, which they’re not.

On the other hand, there can be good that comes out of those things, and if we overlook the learning that comes from them and dismiss the good things that came in their aftermath, then we lose out on half our lives — if not more.

That’s the stuff I’ve been wrangling with, this week. Coming back from my vacation and going back into the fray has been extremely difficult, and I’ve had some meltdowns along the way. It hasn’t been pretty, and I’ve been working my ass off, trying to catch up. I’ve been pretty down on myself, realizing that I still have a ways to go, before I can say for certain what I want to do for my next job, but I just have to keep moving, keep going, keep proceeding. And I can’t just run away from what’s in front of me, because it’s valuable experience that can help me. I still want to leave my employer — but the work I do? Maybe I don’t need to ditch that, as well.

When it all boils down, basically I’m realizing that whatever situation comes up in my life is an opportunity for me to learn and grow and get my act together. And that’s the truth. I’ve been having some tough times at home, behaviorally speaking. And at work I’ve been really on the hot seat. But these are chances for me to (re)learn how to handle myself under intense pressure, because this is certainly not the last time I’m ever going to be under this kind of pressure. Compare to what’s to come, it’s probably child’s play.

I believe it’s the Navy SEALs who say, “The only easy day is yesterday.” Googling it, I see that a lot of people say it, but it’s the unofficial motto of the SEALs. Hm. Those folks again… Is there a theme here?

It’s possible. Looking around at my world, I seem to be surrounded by folks who don’t have principles, who don’t live by any kind of a code, who are just drifting and following whatever moves them. They don’t seem to have any higher purpose than to follow what comes to mind. And suggesting that they find a higher purpose is usually met with resistance – some of it violent.

Don’t get me wrong – my relationship with the Almighty and the morals and ethics of my youth has really been tested over the years. And I can’t say I’m a perfect adherent to what I should or should not do in the eyes of others. But at some point, I have to choose where I’m going and understand why I’m going in that direction. And that often means putting aside my own selfish wishes and just getting on with what needs to be done — AND not paying any attention to others when they aren’t on the same wavelength as I.

How they choose to live their lives is their own business. It’s no concern of mine.

And that being said, as I’m taking responsibility for my actions, I also need to take responsibility for my experience. I am the only person who can hold me down and make me feel badly. Nobody else can do that to me, unless I don’t take responsibility for my own emotions and thoughts. These aren’t just things that show up out of the blue. These are things I can direct and choose to disregard or pay attention to.

And the kinds of thoughts and emotions I choose to pay attention to are going to shape my experience. So in making conscious choices, I create my own experience. I create the world I live in.

Two people can be living under identical conditions — one is in heaven, the other is in hell.

Where do I want to live right here, right now?