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.

21 Tips to Keep Your Shit Together When You’re Depressed.

This is good… Read the whole piece here

A while ago, I penned a fairly angry response to something circulating on the internet – the 21 Habits of Happy People. It pissed me off beyond belief, that there was an inference that if you weren’t Happy, you simply weren’t doing the right things.

I’ve had depression for as long as I can remember. It’s manifested in different ways. I did therapy. I did prozac. I did more therapy. My baseline is melancholic. I’d just made peace with it when I moved, unintentionally, to a place that had markedly less sunshine in the winter. I got seasonal depression. I got that under control. Then I got really, really sick. Turns out it’s a permanent, painful genetic disorder. My last pain-free day was four years ago.

So, this Cult of Happy article just set me off. Just… anger. Rage. Depression is serious – debilitating, often dangerous, and it’s got an enormous stigma. It leaves people to fend for themselves.

It’s bad enough without people ramming Happy Tips at you through facebook. There is no miracle behaviour change that will flip that switch for you. I know, I’ve tried.

Keep reading… >>

The Sixth Stage of Grief (after TBI)

Some days you just have to keep swimming

I’ve been dealing with a lot of grief, lately. The work I’ve done for nearly three years has changed dramatically, and with that change, I am losing a key element of my identity which I am realizing has been a big part of who I see myself to be in the world. Not only that, but my (and other coworkers’) impending change of employment, which is becoming self-evidently inevitable with each passing day, is a source of yet more grief, as I contemplate getting on in my life without these people in my life each day. Even the people I don’t much care for and won’t mind never seeing again, have a place in my life, and my life has been shaped by and oriented to them for years, now. So, making a change is hard.

Making any change is hard for me. It always has been. I take it hard. I spiral. I feel like the world is ending and I can’t see any light at all – tunnel or no tunnel. The grief is almost debilitating, and trying to “sit with it” as some of my meditating advisors suggest, just makes it even more profound. What’s more, when I “invite it fully”, as I’ve heard recommended by a very prominent meditation teacher/practitioner, the waves of grief become so amplified, so intense, so profound, that it practically paralyzes me.

And watching myself and my reactions to this kind of experience, and seeing how the “standard issue” coping mechanisms actually cripple me, it occurs to me that the population best served by those sorts of approaches are neurotypical, non-TBI folks whose brains are not wired / re-wired quite the same way mine is. Seriously, this emotional processing gets to be debilitating. And you know what? Despite having gone through this kind of process more times than I can count in the course of my loss-riddled life, despite promises and belief and a bit of dogma around the formula of the Kübler-Ross model (Denial, Anger, Bargaining, Depression, Acceptance), I’m starting to believe that with TBI you need a sixth stage — PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short.

So we end up with DABDAP. That’s my proposal, anyway.

In brief, according to Wikipedia, the five “stages [of grief], popularly known by the acronym DABDA, include:^[2]

1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
   Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
   The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death.
4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?”
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.
5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person’s situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.

Kübler-Ross originally applied these stages to people suffering from terminal illness. She later expanded this theoretical model to apply to any form of catastrophic personal loss (job, income, freedom). Such losses may also include significant life events such as the death of a loved one, major rejection, end of a relationship or divorce, drug addiction, incarceration, the onset of a disease or chronic illness, an infertility diagnosis, as well as many tragedies and disasters.

As stated before, the Kübler-Ross Model can be used for multiple situations where people are experiencing a significant loss. The subsections below explain how the model is applied differently in a few specific situations. These are just some of the many examples that Kübler-Ross wanted her model to be used for.

Now, in watching how I handle loss and grieve over things, the thing that strikes me is the intensity and duration with which I experience everything — to the point of losing all sense of perspective and temperance. I mean, I just lose it. Each “stage” becomes a raging animal in its own right, and it pulls me down into its jaws like that sinkhole that swallowed that guy in Florida. And nobody, but nobody, can get me out, so long as I’m “feeling it fully” as some teachers suggest.

Seriously, feeling something “fully” is a recipe for disaster with me. The emotion takes on a life of its own and snowballs into something vast and overwhelming and utterly debilitating. And you know what? It doesn’t go away. It stays with me as keenly, 20 years later, as it was when it first arrived. I still teeter on the verge of tears when I think about some losses I had when I was a little kid. I still have to fight back waves of despair and depression when I think about some things that I lost — even when everything turned out okay in the long run. Time doesn’t heal those things with TBI. It just doesn’t. And the more I think about it, the wiser it seems to me that my neuropsych doesn’t tolerate me going off on emotional drama tangents, or encourage me to “feel fully” the crap that I’m going through each day.

Because with brain injury, “fully” is in a whole different league than what most people experience. And the consequences of letting myself get too close to the edge of that pit are WAY too serious. Think Owen Thomas of Allentown, PA — the U Penn football player who hung himself after an uncharacteristic emotional breakdown. He had no history of depression, and no history of mental illness. Yet this young man with a CTE-impacted brain, killed himself, seemingly on a whim.

It’s one thing to go through grief when you’re neurologically intact. Then the 5 “DABDA” stages of grief make sense. But when your impulse control and executive functions and emotional modulation abilities have been compromised… good luck. Here’s how my grief experiences go:

1. Denial — “I feel fine.”; “This can’t be happening, not to me.”
   Denial is usually only a temporary defense for the individual, but for me, it can continue intermittently for quite some time. What’s more, what most people would consider “denial” is more a case of my brain not gathering all the salient facts together and making proper sense of it all in quite the right way. I can go for weeks and months without really realizing what’s going on, because I have not assembled all the pieces of information “in one place” in my brain — it’s not so much denial, as it is the way I process information — with full focus on one or two issues, totally excluding everything else until I have made sense of the one or two that are in front of me. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. In my case, I don’t know that it’s ever really replaced. Wtih me, denial can go on for a long, long time, even after the situation is a distant memory. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage. And with TBI this is more problematic, because as I said above, cognitive processing differences look a lot like denial, when they are just different ways of parsing info and fitting it all together.
2. Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”
   Once in the second stage, the individual recognizes that denial cannot continue. And when this stage comes with someone who has TBI-related anger issues, it can be hell for everyone and anyone. Combine the anger with impulse control issues, and an already underlying lower threshold for anger management, and you’ve got an extremely volatile situation. Because of anger, the person is very difficult nearly impossible to care for due to misplaced feelings of rage and envy. The misplaced feelings can be tied in with a multitude of different life situations, and the feelings themselves can be so amplified that the person can become just a little dangerous. I’ve found myself actually throwing things at my desk at work, over the past few weeks, which is a red flag for me — and H.R. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. Or at nothing or no one in particular. With TBI, you don’t need a reason to be angry. But you sure as hell need strategies for controlling your outbursts and getting your mind out of that state. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief. And it is important to find ways to keep cool and calm down the erupting volcano, when you are dealing with grief and TBI all in one. Seriously, this stage – while it might seem like “just another stage” for neurotypical individuals – can be seriously impactful for someone who’s living with brain injury. It requires a lot more attention and better coping strategies than “letting the process run its course”.
3. Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”
   The third stage involves the hope that the individual can somehow postpone or delay death (or whatever else you’re losing / have lost). Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death. In my case, the bargaining stage doesn’t work very well, because I have difficulty remembering from day to day what I’ve promised in return for a reprieve. It’s almost comical — one day I can bargain and promise that I’ll do such-and-such, but the next day I’ll completely forget that I made that promise and I’ll be back to anger and sadness and denial and all the other stages. Then I’ll remember, “Oh, yeah – I promised that if I did such-and-such, I will get such-and-such… But I’ve already forgotten, so I didn’t hold up my end of the bargain, so why should things work out the way I want them to?” Hence, bargaining is not much of a strategy for me. It only works if you can remember what you promised the day or week before.
4. Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?” And so on. Heck, you don’t even need a specific thought or point of view to get depressed with TBI. With me, levels of depression are directly related to how much energy I’ve expended on things, how much I’ve worn myself out, and how much more I feel I need to do. When I have a lot on my plate but I don’t have a lot of energy, and I have been living on pure adrenaline for days, *wham* I get depressed. Severely. The thing is, it passes as quickly as it arrives, given the right circumstances. I can’t even begin to count the number of times I have “snapped out of it” when I was feeling so low, so close to the edge. I used to get alarmed, when I would sink so low. Now I am often aware that my depression is a temporary thing, and all I need to do — literally — is get my mind off what’s bothering me, to feel instantly better.
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. … Um, maybe for someone who is dying, but not for someone like me who is sinking into a depression over some stupid sh*t that’s gotten the best of ‘em because they ran out of energy and are feeling sorry for themself. It is an important time for grieving that must be processed. But if I stay in it, heaven help me. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Or it can show that the person has lost all perspective and is sinking into a hole that they really need to get out of, while they still have some measure of self-control and at least a little access to perspective. Leaving me in a depressed state for an extended period of time is just not good. Fortunately, I usually know how to get myself out of it. In some cases, watching America’s Funniest Home Videos will do the trick — at least then I know I’m not the stupidest person in the world.
5. Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.” “And there is no way I can avoid this, so I might as well suck it up and get on with what I need to do.”
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This is where I get to the point where I can let go of any attempts to block what’s happening and just get on with dealing with what I need to deal with. This stage varies according to the person’s situation. And it can come and go (when you have TBI issues) as quickly as any of the other stages above. Seriously, I can be in a state of full-blown acceptance and peace one moment, then cycle through all the other stages in an instant. It’s crazy-making. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. And people who have TBI issues can never permanently reach this stage. At least, in my experience I haven’t. God, there is a whole lot of old sh*t I still struggle with. I know acceptance is in there somewhere, but it has to share space with the other four stages concurrently.
6. Which leads me to the last stage PIAAGOWYL — Put It Aside And Get On With Your Life. Or P for short. This is the thing I do when I am just done with the suffering, done with the anguish, done with it all, and I just don’t have the strength left to continue on. My brain gets fixed on all those stages, at varying times and to varying degrees, and from one day to the next, I can still be impacted by things that happened to me years ago, which I haven’t been able to get out of my system. The old “shadows” of those raw emotions are still very real to me, and I feel them intensely. I have worked like mad to get rid of them, to work my way through them, but I suspect that my impacted working memory and other memory issues may prevent me from retaining the “lessons” I’ve gotten from “processing” all the stuff before. It’s like I never even learned those lessons, when I am in a certain frame of mind. So I cannot spend a ton of time working my way through them. They’re just there. I just have to move on. I just have to live my life and do what I need to do, regardless of how I feel or what my head is telling me about me and my life.

I’m sure that there are plenty of people who have benefited from understanding and applying the DABDA model. I have no doubt of that. In my case, however, I have to put the emphasis on Putting It All Aside and Getting On With My Life — realizing that “these things happen”, that losses are inevitable, that when it happens, it’s not much f*ckin’ fun, and it’s going to hurt like a bitch, but ultimately I’ve got to just live my life, no matter what. I have to continue to function, even when I’m thrown for a loop. I have to make the most of my life, even when everything is falling to pieces, which often feels like is the case… even if there is no specific event I’m forced to deal with.

See, that’s the other piece of things. I can get sucked into a hole, even when things are good. If I’m tired, and I’m pushing myself, and I’m irritable or agitated, my mood can swing to the south in a hurry. It doesn’t matter that everything is hunky dory around me. I can feel like sh*t at an instant’s notice. All I need is some fatigue, maybe a sugar crash, maybe a bit of psychological catastrophic overwhelm about something complicated that I am trying to get done which suddenly looks like it’s too much for me. Anything can set me off. Anything. I can be sitting talking with someone about good things going well, then all of a sudden, I’m in the dumps… overcome by a thick black cloud of confusion and depression.

But then, just as quickly, the depression lifts — sometimes for good reason, other times for no apparent reason at all. Rather than puzzle over it and try to figure it all out, I just have to move on.

Speaking of moving on, it’s time to get to work.

More later.

When things don’t go as planned

Sometimes there’s high seas ahead – oil painting by Joyce Ortner – click to see her gallery

I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.

I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.

Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.

Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.

The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.

I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.

Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.

Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.

So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.

That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.

Anyway, that’s one example of things not working out as planned, and it being okay.

Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.

Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.

So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.

I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.

So, it’s back to using the tools I was working with  before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it.  I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.

So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.

Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.

Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.

Now, to go for my morning walk in the woods.

And so the search for meaning begins

For Sandy Hook – Newtown, CT

The holidays are always a bitter-sweet time for me. It is supposed to be a time of joy and happiness and celebration, but I have always dreaded it. There’s something about the crush, the rush, the pressure to perform, the urgency that everyone is feeling to “get it right”, and the lingering sense that — yet again — I have not accomplished all I set out to, 11-1/2 months ago.

This year was looking like it was going to be a little different. I haven’t got any extra money, so the whole Christmas shopping thing has been a non-event for me. And there hasn’t been much snow at all, with the weather warmer than expected, and the snow that did fall rapidly melting away. I haven’t been in any sort of Christmas spirit at all. Far from it. But I was fine with that, because I’ve felt a lot of peace and equanimity, which I haven’t often felt at Christmas time.

Then some batsh*t crazy f*cker walks into an elementary school and kills 20 kids and 6 adults. Little kids. Babies. Gone. The shooter’s gone, too – along with his mother, whom he killed first. And last I heard, they were questioning his brother.

Shit. All day yesterday, it has been on my mind so much that I missed two turns on my way home and I spent 30 extra minutes driving to pick up supper I’d ordered. By the time I got home, dinner was a little cool. I didn’t break down and weep like many folks I know, but I did call home to tell my spouse how much I loved them. No matter how dulled we may be to the cruelties and anguish of this world, awful tragedies like this do alter our world view at least a little and force us to look at the world with fresh eyes.

Senseless. Awful beyond description. Horrifying.

Preventable?

How? Why?

… Why?

At times like this, our national instincts seem to respond in two ways — one, with unimaginable grief and horror… two, with clinical, distant reasoning that reaches conclusions that seem “logical” enough to the thinkers. On the one hand, there are those who plunge into grief and compassion… and pray. And then there are those who raise the banners of their crusade and charge forth into battle — to either stem the tide of semi-automatic assault weapons that keep showing up on the news, or to call for an even more aggressively armed society where people will think twice before they do something like this… again.

Before the shouting begins (although it already has), I need to take a breath and remember that I too will feel the eager pull of diving into the debate about gun control and the rights to keep and bear arms. I need to remember that I am tired and frustrated and in pain for these families, and that inclines me to say and do things that I wouldn’t otherwise do. I need to remember that the things that I often think are really good ideas, often… aren’t. And the things I want to say and do under such circumstances may not match the things I’d say and do under more ideal conditions.

I need to hold back and not strike out at others whose politics and cultural habits seem to either feed this scourge of shootings that has become so terribly commonplace, perpetuate it with apathy and denial, or alienate and polarize members of “the other side” so that no constructive debate can actually happen. My feelings on the issue of gun control, medication, mental illness, and personal/public security are many and varied, and I don’t fall easily into any one camp. I can easily burn through the friendships I have with a wide variety of people, over this whole thing… and I can’t afford to just alienate everyone on a passing (and passionate) whim.

So, I need to stop — just stop — and check myself, before I start doing and saying things that I can’t take back.

Ultimately, times like this — as senseless and as horrifying as they are — serve most to remind me just how much suffering there is in the world. Without getting into the reasons “why” or pointing fingers or laying blame — as we all love to do — I need to just remember that this kind of thing happens terribly often, all over the world. And whether the parents are in Newtown, Connecticut or in Kandahar Province or in Marseilles or in Chenpeng or in Baghdad, there are an awful lot of them who are losing their kids and parents and teachers to violence they would do anything to avoid, but cannot.

Times like this, I also need to remember how quickly we all tend to “apportion” our compassion. Closer to home, it’s easier to feel the burn and recognize the true horror. When the kids and teachers look like OUR kids and teachers… when they speak the same language, when they eat the same foods, keep the same schedule, vote for the same politicians, and could easily be related to us, it hits us so much harder when something this awful happens.

When the others are… well, other… it becomes a different story. Especially when the others are on the other side politically or geographically, or we’ve been told there is a Very Good Reason why they are being forced to suffer — sometimes in our names, with our tax dollars buying the ammo. And then there are those who are so remote from us, politically and socially and culturally and racially, who are undergoing such horrifying violence and destruction, it is literally impossible for us to get our heads around it, and the best we can do is try to protect ourselves and our kids and our families from having that happen to them.

And that’s all the suffering that’s on the surface. Deep beneath the careful veneer of everyday functioning, there are countless individuals who struggle daily with pain and anguish they neither understand nor can seem to overcome. There are countless individuals whose pain and suffering is well concealed, which cannot be guessed at by anyone nearby. The concealment can be deliberate — they can’t afford to let anyone know — or by default — either because others cannot fathom what it’s like, or they choose not to see. It could very well be that others choose not to see because their own inner pain is so profound that, to open that up is not an option… they literally feel like that might kill them.

And so they don’t open up to it. They stay closed. They get on with things. And they expect others to do the same.

I wish I could do just that — shut down and suck it up… and get on with it. I wish it were that easy. I wish I could just pretend away the headaches, the memory lapses, the distractability, the inner storms that rage at times, the frustrations, the sleeplessness, the stress, the nagging uncertainty about, well, everything. I wish all those things, compared to what happened yesterday in Connecticut, paled and didn’t matter or affect me. I wish I could dismiss it all, since compared to some, I have it really great.

But it’s not that easy. It’s not that simple. And while focusing on the pain of others does put things in perspective and make me incredibly grateful for what I have, I still have to deal with my own issues as I get on with my day. I’m not feeling well this morning. I haven’t felt well for most of this week. I’m fighting off a cold, with my ears filling up with fluid and my balance going haywire. I’m distracted, too, by all this anguish. Which makes me particularly vulnerable to more injury, if I’m not careful. I have to get back to some semblance of normal after a grueling couple of weeks, which is a prelude to an even more challenging 8 days before I leave for my marathon Christmas/New Years tour through five states and several families.

I just don’t feel right. And a whole lot of other people don’t either. We keep checking the news to understand “why”. We keep checking Facebook to see how others are dealing with this. We loop through question after question after question in our shuddering minds, unable to get our heads around it, haunted by the images of the parents and the kids, unable to keep from imagining what it must be like… even if it does us and them no good to do so. At some point, we just have to stop. Just stop. Take a break. Go back to bed. Or go shop. Run some errands. Just do something — anything — to get our heads off it. And all the while, Why… why…? Along with the constant running commentary in my head that pretends to “know why” as a form of logic-driven self-defense in the face of such loss.

… Why?

This world is hardly a simple, cut-and-dried sort of place, and this holiday season may or may not be even worth celebrating. Suffering is rampant on any given day, and this time of year is no exception. In Connecticut this Christmas, there will be toys that cannot be opened, and there will be pain so great it is unspeakable. There are just no words…

And around the world, this holiday season, there are countless other families who have lost babies… mothers… fathers… loved ones.  To war or fire or famine or flood or drought or disease or any number of other reasons. They are brown or yellow or black or red or white. Some of them are even in our own country, living on the fringes of our Great American Experiment, watching their loved ones and all their own hope fade before their very eyes, as so many look away.

This is what I bring with me this holiday season – not just the urge to “be happy” in the face of it all (although that is certainly part of it), but to see and know and understand the other side of happy — the pain and the suffering that so many, myself included, endure at this time. This is not to say that I am succumbing to the dark pull of the nebula of suffering that lurks at the edges of our personal universes, but to say that I can see and feel clearly how much pain and suffering there really is in the world. There are so many who are so alone, whether or not they are the only one in the room. There are so many who struggle and suffer in silence without recognition or support from others. There are so many who carry immense pain and anguish with them over invisible difficulties that they just can’t shake. And seeing and feeling that seems only right, in this time when there is — at the same time — so much light.

Because there is. On the 21st of December, the Winter Solstice will mark the expansion of daylight in our northern hemisphere. The darkening days (literally) will give way to longer hours of light, and a shorter night. This will not eradicate the night — hardly — only give us more light to see our way, for more hours of each day. And when I think of that, when I think of how the world turns and changes, and how many myriad times we have all been through the darkest of dark times and the brightest of bright times, I know that other side of things — the peace and the joy and the hope. Peace that passeth understanding. Joy unbounded. And hope beyond hope.

This is the ultimate irony of this season — that it is such an extremely hard time for many, and yet it has so much hope and promise in it. That 20 little children and adults who were trying to care for and protect them were gunned down, less than two weeks before Christmas is something that will overshadow this season for many years to come. I can’t imagine that a single Christmas will ever pass again without this being remembered.

And in the midst of this remembering, I have to also keep in mind, how many others are suffering — hidden or forgotten or both… how many others are struggling, for other reasons… how many others have lost hope and have no idea what comes next. The politicking and social debates and cultural clashes are bound to flare up soon, which to me adds an even greater pall over these events, even as I know that some sort of change is necessary. It’s not the debate that gets me — it’s the tone of it, the tenor, the divisiveness and the aggression. From each side towards the other. What I need to keep in mind, as those battles rage, is that the source of the frustration and the aggression and the divisiveness is nothing less than human nature — fueled by passion over Things That Matter.

It’s not the greatest comfort, but it is something.

In the end, though, I can’t afford to be felled by this experience. I was not in Connecticut. I do not know those families or those children. My own involvement is as limited with them, as it is with families in Ramallah who lose their kids, too. The fact that they are from my country doesn’t mean they are any more or less valuable than anyone else. ALL are valuable, and ALL matter, and enough with the apportioning of compassion to decide who matters, and who doesn’t.  The fact of this horrible shock doesn’t make the sufferings of others any less — the homeless vets struggling with PTSD and TBI on the bitterly cold streets of Chicago or Philadelphia… the families in the Detroit area who are being evicted because they cannot pay their rent… the farmer in South Dakota who lost his barn to fire… the housewife in Boise whose doctor can’t explain that nagging pain in her abdomen… the injured, the broken, the burned, the terminally ill… whether ambulatory or bedridden… whether about to be discharged to go home and recover, or to be moved to hospice to pass on during the Christmas season…. whether cut down in the flower of life, or struggling with lingering dementia in their final days/weeks/months/years/who-can-tell-how-long? For all the light that comes in, this is NOT an easy time for many.

And so it becomes all the more important to find light… to find something else to dwell on… not to banish the pain, but to find the strength to face it. We must find sources of strength and light, so that we can keep ourselves going in this seemingly impossible stretch of “holiday cheer”. We cannot run our best on fumes, and we cannot keep our strength up by dwelling only on darkness. We must seek more, we must find better. For the sake of facing What Is… no matter what.

Ultimately, it really is our choice, what we choose to do with these situations. We can allow ourselves to be pulled down into nothingness and give up hope entirely. Or we can see with different eyes and choose something different for ourselves. We can starve ourselves in grief… or stuff ourselves with sweets in denial… or we can eat sensibly and exercise and get on with doing what needs to be done. What others do… we have no control. What comes of our actions and reactions… that we do have some say in. And what we choose matters a great deal. To everyone around us.

But I have gone on too long… looking for meaning in all of this. Hoping for hope. Digging for clues. The earth cries out with the loss of each child, the ground soaked with young blood the world over. How we choose to approach it, how we decide to use that knowledge… it is up to you. So choose wisely.

And let there be Life, as well.

What I’ve left behind

Somewhere, someone cares about your loss

I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.

I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.

In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.

But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.

Am I being vague? Here are some examples of choices by loved-ones that depress me:

• Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
• Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
• Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
• Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
• Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.

I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.

Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.

So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.

So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.

But no, it didn’t happen that way. And I am bereft.

This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.

Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.

But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.

When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.

When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).

When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.

And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.

This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.

As I believe I once was.

See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.

I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.

Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.

Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.

Loss. Lonely, lonely loss.

But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.

The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.

The next thing I do, is understand what it is that I am mourning the loss of.

I recently realized that I can group my losses into two different categories:

• Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
  • false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
  • possessions that other people told me mattered, but I just didn’t care about
  • 100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
  • public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation

• Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
  • being able to read things and understand them immediately
  • constant abundant energy
  • clear, quick thinking and definite decisions
  • my ability to earn top dollar almost without thinking about it
  • my ability to learn new things quickly and use what I learned quickly
  • confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)

In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.

Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?

But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.

Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.

And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.

Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.

Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.

Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how I once was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.

…

Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.

I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.

That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.

Onward. To the future.

This is not how I want to think, but I’m going to say it anyway

I have been feeling very down, these past few days. I know that I am over-tired, and that has a lot to do with it. But still… I feel down, and I don’t like it.

On the one hand, I know I am making really good progress with my job and my skills. I feel very positive and hopeful about my future.

But on the other hand, I am sad about how things have turned out with my present situation, and I am kind of mourning the passing of all the high hopes I had for the job I am trying to leave.

It’s really got very little to do with me, the way the job has changed. And the things I’ve been asked to do have been so overwhelmingly complex — for anyone — that anyone would have struggled the way I have been struggling. I know that now, although for some time I thought it was really me that had the problem. The problem is not with me. It is with the job.

And yet there’s a part of me that won’t let go of the idea that I should have been able to make it work. Somehow. If I wanted it badly enough, I would have managed. If I’d been willing to work a little harder… if I’d been smarter… if I’d reached out and asked for help more often…

Blah-blah-blah. The committee in my head is not doing me any favors. The fact of the matter is, it is NOT me – it is the job. And the more I think about it, the more I realize that my boss’es boss has probably wanted me gone for about a year, now, since they started changing the focus of the team I’m on. I really don’t fit into their version of how people should work, or what makes us productive team members. They are very much into competition, blaming, making fun of people behind their backs, finding fault, being aggressive towards others, and schmoozing up to the people in charge.

Which is the exact opposite of how I am. And that’s precisely why I’ve been so successful in my work — because I am into collaboration and cooperation, including people from different teams, being respectful of others and treating them like professional colleagues (which they are), and telling the truth instead of slanted version which will make me (or my boss) look good.

The fact of the matter is, they cannot dare not include me in meetings, because I’m not willing to cover them and their lies, and if things are messed up and need to be fixed, I say it — and get down to fixing them.

So, it’s really small wonder that I’m not being made to feel welcome, that the rest of the group is “circling the wagons” and keeping me at arms’ length, and that I am never included in important discussions until after the decisions have been made. It’s just not a good fit – but that’s probably a testament to my effectiveness and the quality of my work, rather than a dark mark against me.

Even so, I’m bummed that this isn’t working out… that I need to find another job… that I have to deal with recruiters and hiring managers again… I’m also a little paranoid that the hiring managers and recruiters I talked to about a month ago have not gotten back to me, even though they said they would call me. I don’t like feeling like this — paranoid and self-doubting.

What I really want is to just do my own thing. Just cut loose from this crazy day-job business and find a way to work by myself, for myself. It may be me just wanting to isolate and avoid others because of all the wrong reasons, but I that’s how I feel. Or maybe I just need to be in an uber-geeky environment, as I once was, and that will help. I got a couple of lottery tickets last night – just in case. I should check them….

Okay, what would make me feel better? Being free of the foolishness, that’s what. I just feel like people can be so cruel and dense — like all the stupid comments and jokes people are making about Hurricane Sandy, when there are real lives at stake. And I am so tired of being surrounded by people who care more about what others think of them, than what the right thing to do is.

God, just let me crawl into my little hole and let the world pass me by…

On the other hand (and here’s the weird/manic part about it), I am feeling incredibly calm and sure and certain and hopeful, and I am so excited about the next phase of my life. I have a much clearer view of where I’m going and what I want to be doing with myself, and I am taking steps to follow that. I know that this present situation – uncomfortable and sad as it is – is a temporary one. And I know that things always change. Always. So, I can’t get too bummed out.

All the same, I am feeling bummed out, some of the time. I’m tired. I know that.  It’s normal for times of change. I know that too. And the holidays are coming, with my crazy family waiting for me. That isn’t helping.

Oh, well. I’ve got to get back to my studying, so I can get my mind off this. It’s just change, and change is hard for me — extremely hard. I wish it weren’t, but it’s always been. Even when it’s good change.

So, I guess I’ll stop whining now and get on with it. Do something constructive to get my head off things, and just “channel” some of this energy, as they say.

Onward.

Learning to do it anyway

Sometimes it feels like the weight of the world…

Woke up this morning feeling sick – headache, sick on my stomach, foggy… Going back to work tomorrow probably isn’t helping any, but life goes on. There it is.

I’m pretty much in the Emotions/Moods “section” of those 84 ways TBI can make your life really interesting

Emotions/Moods

8. Agitated, can’t settle down – I’m all wound up and can’t seem to get myself to chill to get to bed at a decent hour each night. I’m way agitated, and fidgety and am having trouble focusing in to get shit done.
9. Angerrrrrr!!! – I’m pissed off. At work. At my spouse. At myself. I’m just angry. It’s driving me — it’s driving me crazy.
10. Anxiety – Feeling vague fear, worry, anticipation of doom – Yeah, when I go back to work tomorrow, I have the feeling that I’m going to be so totally screwed by my workload and the “lost week+” that I’ve had away. Not that it’s any different than it’s been for the past year or so, but now the sense of doom is really coming in.
11. Depression, feeling down - My mood has actually been pretty good… but I have to really fight back the depression. It sets in quickly if I don’t stay on it.
12. Excitability! – I get all worked up over stuff, then I come back to it later and I can’t see what all the excitement was about. The worst thing about the excitability is that it distracts me and takes me off-course, so it takes me longer to get where I’m going.
13. Everything feels like an effort – Yeah, pretty much. It feels like everything is a massive effort, and I can’t figure out where to start.
14. Feeling unsure of yourself – Yeah, pretty much all the time, these days. I know better (rationally) and I fight it back, but that feeling is always there… like I never know what’s going to come out of my mouth or what I’m going to do next. Sometimes I get it right, sometimes I don’t, but I’m never 100% sure what’s going to happen.
15. Feelings of dread – Yeah, that. Dread and anxiety. Like I just can’t deal with sh*t.
16. Feeling like you’re observing yourself from afar - This is a weird one, because it’s really like that. It’s like I’m standing at a distance and watching myself do and say things that don’t make any sense to me.
17. Feelings of well-being – On and off. It’s not all bad, all the time. Sometimes I have these sudden rushes of feeling really good, really solid, really sound. It’s a nice break.
18. Feeling guilty – Guilty over what I’ve done and what I haven’t done… what I should have done, what I forgot to do.
19. Feeling hostile towards others – Yeah, this is a tough one. I’m not feeling that great today, and we have a friend staying over, and I have to watch myself to not come across as hostile and aggressive, because they’re pretty sensitive and have a hard time making and keeping friends, as it is. My hostility has nothing to do with them, but they could easily become a target, if I don’t manage this.
20. Impatience – Yeah – what’s taking everything so long?
21. Irritability – Like the hostility, I’ve gotta keep a handle on this. Others shouldn’t have to pay for my issues. It has nothing to do with them.
22. No desire to talk or  move – This one set in when I woke up, and it’s still there. The antidote? Get the hell up and do something. Anything. Just move, goddammit.
23. Feeling lonely – Yeah. That. The consolation I get is that I’m not alone in feeling lonely. Plenty of people do. I also need to focus on the fact of what I’ve got in common with others, and that helps.
24. Nervousness – Nervous about work, nervous about money, nervous about life. Nervous.
25. Feelings of panic – On and off. This is much less extreme than it was several years ago. I’ve learned how to relax. I’ve learned how to recognize the signs that I’m just panicking, and it has nothing to do with actual reality. Breathing helps.
26. Rapid mood swings – Yeah, gotta watch that. I’m sick and tired today, so I know I’m more susceptible.
27. Restlessness – I want to run, I want to walk, I want to jump in the car and drive away. I want to go out and pick a fight. Not my best ideas… and I know it’s just the fatigue, the fogginess, the feeling of being “off” that’s doing this. Adrenaline and novelty blocks out all the distracting what-not-ness that’s swirling in my head. Surely, doing something extreme will take my mind off it. Well, sure – but at what cost?
28. Tearfulness, crying spells – Not so far, which is good. A few days ago, when I was feeling really sick, I had this. Thankfully it passed. Of all the TBI issues that come up, the tearfulness is the worst for me.
29. Feeling tense – Yeah. That. Like I’m wound so tight, I’m either going to snap, or I’m going to shoot straight to the moon. Tense. Really Tense. Black Flag Tense.
30. Feeling vague longing/yearning – Absolutely – for something I want and need, but can’t quite put my finger on. I used to have an antidote for this: daily meditation and breathing. Then I got sick of it and stopped doing it, because I just wanted to get on with my days with out having a lot of ritual and sh*t to do, first thing in the morning.

And as a result of these things, I’m also grappling with the follwing:

Day-to-Day Activities
31. Being overly busy (more than usual) - I’ve got all this stuff I want to do, and it’s piling up. I’m making myself crazy with it.
32. Feeling like you can’t get moving, you’re stuck – And under this pile of stuff, there I am, pinned down and feeling like I can’t move.
33. Feeling like you can’t get anything done - It’s just a feeling, I know, but that’s how I feel right now — nothing is moving, I can’t get anything accomplished.

Geeze. Enough of this. Yeah, things aren’t great right now, but once I get moving, I’m sure they’ll loosen up. That’s the thing that I’ve had to learn, over and over again. I can’t start from where I want to be (feeling great and having a lot of stuff done). I need to start from where I am — even if it’s sick and tired and foggy and aggressive and a bit ragged around the edges.

Gotta get out of my head and find something to really focus on. Just gotta. I’ve got to get my mind off this headache, this nausea, this fogginess, and all the above-mentioned crap. I’ve got to just get moving and do what needs to be done today. I do have things I need to take care of, and I just need to do them. I’ve had two days to recover and recoup, and that’s been good. Now I need to kick it again and get a move on. No matter how I feel, just do what needs to be done, and then enjoy having done it.

Yeah, it’s turning out to be a beautiful day, so I can get some work done in the yard and hang out with this friend. I will need to watch myself today, to make sure I’m not all edgy around them, so I don’t chase them off the way I have chased off many other people. I just need to keep cool, keep focused on what needs to get done, and do it.

And then sleep this afternoon. Get some rest. And get ready to go back to everyday normal life. Things will take care of themselves, if I’m just honest with myself and keep an eye on myself. This is not rocket science, it’s just life. Everybody has to contend with this, TBI or no. So deal with it, I shall.

After all, it is a beautiful day.

Managing, instead of controlling

September 15, 2012

Long day yesterday, that’s for sure. It was a good day, though, and while I have some complaints, I have no regrets. Well, maybe a few, but not enough to wreck the memory of the day for me.

The friends who were coming out for a few days were delayed by about three hours. Locked the keys in the truck. Couldn’t get the door open. Had to break off a piece of the trim to jimmy the door. Got to us about half an hour before we were supposed to close up shop and clear out from the beach. Overstayed our allotted time. Had an interesting conversation with a park ranger. Got back to the condo and crashed.

All in a day’s work.

These friends of mine, I have to say, are a bit of a bad influence on me. They go from one drama to the next, creating havoc around them with bad decisions and knee-jerk reactions, and never really planning anything ahead of time or thinking things through in a rational way. They “go with the flow” and the flow usually takes them around the barn and back again… and never gets them where they want to go. And then they blame “the universe” for their misfortunes. They believe that the deck is stacked against them, that the hard things they experienced in their past were put there to keep them down and keep them in their place. They believe that life is intentionally unkind towards them, and the interpret the misfortunes of their lives as something “God” puts on them, either as a test or as proof that they’re really not good people, after all. Life, for them, is a constant challenge, a perpetual dance of punishment and reward that confirms in their mind, over and over again, that they are somehow not good enough, somehow broken, somehow not worth bothering with.

They’re the kind of people I used to really relate to. They’re the kind of person I used to be.

And at this point – with another 24-48 hours until they leave, my main challenge is to keep from letting them pull me down into their drama, their perpetual fight-flight, their poor planning and lousy decisions and depressiveness. They really can be depressing. And depressive. And the hardest thing for me, when they’re around, is to not end up lecturing them about how they need to get their act in gear and actually get on with living their lives – not just bouncing from one drama to the next.

Life is an all-or-nothing thing with them. Either everything is great, or it’s shit. They are either doing great, or they’re locked in some sort of struggle to make everything 100% great. It’s totally unrealistic, but it drives them. It keeps them going.

And I think a lot about how I used to be, when I look at them. I used to be very much oriented that way – life was rigged against me, it was set up for me to lose. I couldn’t do anything right, and hoping for any real progress was a lost cause. I was very all-or-nothing, myself, and I was constantly struggling and fighting to make it come out right, no matter what it took.

The same was true of me managing my TBI issues. I felt like I HAD to get them all in line – the forgetfulness, the distractability, the moodiness, the attentional problems. I had to constantly fight to overcome them all, and keep them all in check. I thought I could do it. Each and every day – even though I wasn’t consciously aware of it – was a struggle to make sure that my TBI symptoms were tamped down and under strict control. I thought if I did not control them, they would get the better of me, and I would be screwed.

That all-of-nothing attitude really messed with my head. Because TBI is a chronic condition, and it’s not the sort of thing that goes away. Ever. It’s a personal “constellation” of individual symptoms that vary from person to person, and that makes it a challenge to understand and “treat” with a cookie-cutter approach. But when you understand it as a chronic condition that fluctuates and varies, then that gives you something to work with. Like any chronic illness, it comes and goes, flares up and dies back, gets easier – then harder – then easier – then harder, and it keeps you on your toes.

The thing it doesn’t do, is go away completely. It just doesn’t. It stays around, sometimes dormant, sometimes very obvious. It’s your companion for life, like it or not.

Like any companion, it can be difficult (or sometimes easy) to live with. And like a human companion, it doesn’t take well to you trying to control it. It has a life of its own, an “intelligence” of its own, and it will do what it damn’ well pleases, no matter what you may think or wish or feel. Controlling the symptoms may work to some extent, but unless you actively manage the whole condition, you can find yourself locked in a constant battle of wills with the way things are, winning some, losing some, and always on edge about why things aren’t working or why they’re not turning out like you want.

Of course, in life, a whole lot of people are geared towards trying to control things, rather than managing the root causes. They’d rather just go along and do… whatever… and not have to bother with taking responsibility for their health, their decisions, their actions. They don’t bother getting things together ahead of time, because, well, it’s not much fun. And they want to “go with the flow”. Maybe their parents were really geared towards managing situations. Maybe they came from a family where the people who did all the managing were a source of pain and suffering. And those experiences made them not want to be like them.

Whatever the reason, whatever the cause, they don’t want to bother with the business of managing their lives. And they are convinced that because things didn’t work out, they are doomed for all time.

It’s really a shame that this happens. And it’s also totally understandable. I used to be like that, till I started getting more information about how things worked, and I started trying to do things differently. When I got the information I needed to make some significant changes in my life, things started to turn around. It was a lot work, sure – it still is, each and every day – but it’s worth it. I’m no longer in a constant state of confusion and dread about every social interaction I have, and every serious undertaking I pursue. I have learned a lot – mostly by trial and error – and things are improving. Still, it’s a lot of work. And it’s a totally different orientation than I used to have in my life.

What matters most

Check it out… ask yourself, what matters…?

There’s nothing like reading international news to put things in perspective for me. I’ve been reading news from Europe and Asia-Pacific, thanks in part to Google Translate, English versions of foreign news sites, Google Chrome, and the BBC News website.

Looking outside the USA for what’s going on in the world, it’s obvious that there is a whole lot more to think about and experience, than the current election frenzy that dominates all the news cycles. I’m not going to get into the political choices here – there’s lots of opportunity to explore that … everywhere else. What concerns me here is the narrow-sightedness of the the news cycles and the fractiousness of it all. It gets us so worked up, so jammed in political fight-club mode, that when all is said and done, rational thought doesn’t really have much to do with anything – it seems to be all about whose side you’re on, not the subtle and often gray-area issues of our time.

It’s a little depressing for me. Especially considering that all this focus is being put on the every-four-years contest at the expense of other everyday concerns that are much more immediate than political platforms and endorsements. I have a lot of friends who argue that this has everything to do with political platforms — that who’s in power determines who gets helped, and who gets screwed. It all depends who you talk to.

Anyway, looking at the news from around the world, New Zealand has been having earthquakes, and a teen was found dead after a night of heavy drinking. The makers of Thalidomide have apologized, but  British citizens find the apology “insulting”. In Germany, Arabic youth attacked a Jewish Rabbi and threatened the life of his six-year-old daughter. The Paralympics have kicked off in London, and in France there’s sport, politics, and fashion drama.

I haven’t ventured to look at news from Africa, for it seldom seems to be really good. Same with many other countries. Most of the world, in fact. Maybe it’s the nature of the news, that whatever bleeds inevitably leads. In any case, I have to take care about what I fill my head with. Especially when I’m sick and already feel like crap.

Being sick gives me some much-needed leeway to cut back on my activities and concentrate on the barest of basics — food, sleep, fluids, meds, and more sleep. And while it’s been entertaining to read the news, I’m in the mood for something more substantial, actually. Interestingly, I’m in the mood for sports and fiction — real life stories of contest and experience that tell me more about the human condition than a simple one-page news bite, burdened by my ignorance about what it’s really like to live in those places I read about.

Of course, with my presently ill state of body (and to some extent mind), there’s only so much I can do. There’s only so much I want to do. I know I need to do some work-work to catch up with what I missed yesterday, due to illness. And I know I need to study and practice my technical stuff. But beneath it all, there’s this very real need to, well, feel human again.

It’s an interesting feeling, this really needing to feel human. You would think it’s always there, but it tends to elude me when I am so focused on doing-doing-doing, on setting goals and achieving them. I get so caught up in the busy-ness of life, that I neglect to just stop and live my life — to experience it as it happens. And I forget to reach out to others and see what it’s like for them. It’s no good for me to stay limited to my own perspective, alone. Maybe that’s where reading international news helps me. It widens my perspective, and even when I read about things that seem trivial to me but are so very important to others (take fashion, for example), I’m forced to really ask myself what it must be like to live that kind of life, where such things are considered so very essential, even beyond the basics of everyday life, like food and water and shelter.

We humans are an interesting species, aren’t we? So much that matters to us for different reasons… so much that gets on our radar… or not. Ultimately, I think the important thing is not so much *what* we think is important, but whether or not we have those important things in our lives. Do we have priorities? Do we have things that really, really matter to us — and do we have enough things that matter, to have a handful of them that matter more than others?

It’s that quality of living that I am seeking out more and more as time passes. It helps my brain, it helps my spirit. Having things that really matter to me, and having some things matter more than others… and finding ways to keep that spark alive… that matters to me. And it matters more than money, more than material success, more than any tangible belongings. Now, obviously making money matters. And material success with its tangible results also matter. But you can have those things — I have in the past — and not feel much of a connection to them, or even to your own life.

I’m fortunate that when I did have those things, I had a really strong connection to my life, and to the experiences of my life. I wasn’t just on a track to Get More Now. It was about living fully and living every moment of the day for me. And when I fell in 2004, and that went away, losing that sense of connection with my own life, and having my ability to really live curtailed by fatigue, confusion, anger, and crazy emotional roller coasters didn’t help matters any. In fact, more than losing the money, losing the jobs, almost losing my marriage, it hurt way more to lose that sense of connection to my own life. It was this huge hole that I couldn’t seem to fill or patch up or repair.

I really think it was because I was working so hard to just maintain, to rebuild those connections in my brain, in my life. I think I was funneling every last bit of energy into getting back to some semblance of functionality, of figuring out where I stood, where I was supposed to be, etc. that I just had no energy left over to just enjoy my life and experience it as it came. Nothing made sense anymore. It was the strangest thing. And it’s still strange, because even though I do have evidence that I’ve repaired a lot of what was broken, on some days, it just doesn’t feel like my life. It feels like a life I’m trying to build back… and it feels like there are all kinds of holes in it.

It’s really hard to describe, and if you haven’t been there, I’m not sure if it makes any sense. But I still feel like a stranger to myself in many ways. My neuropsych thinks its wonderfully exciting for me to be rebuilding my life and rediscovering parts of myself, but what about me missing the parts of me I used to know, but have now morphed into something else? What about dealing with the things about myself that I feel like I’ve lost and cannot seem to get back? Yes, it is great to be building back my life on purpose, yet it feels like a whole lot of work, and those new pieces just don’t feel very familiar or comfortable.

I don’t know what feels familiar or comfortable anymore. I just don’t.

Well, today is a poor day for me to be plumbing the depths of my soul, because I’m really sick and my head is foggier than usual, and I really do feel pretty bizarre, overall. I need to go back to bed and sleep, and I’ll do that in a few more minutes. I’m sure I’ll feel better when I get up — the meds have been working pretty well. And I’ll have some more of myself back — a sense of myself that is settled and okay and able to take in the feel of this day and this long weekend. It’s just a matter of rest. Of sleep.

I’ve cleared my calendar of everything except the most basic things, this weekend. I’ve got movies and books and the web to keep me company. I’ve got meds and tea and cough drops and tissues and sleep to help me mend. I’ve got an extra day to really soak it all in.

And soak it in, I shall. The experience of being sick, of being overloaded, of being fed up and motivated all in one. I shall soak up the pacing of the language of websites from far beyond my immediate world, and I shall see what is there for me to experience … really experience. It’s not all delightful. It’s not all fun and intriguing. Sometimes, it’s just plain boring, irritating, pathetic, and drably pedestiran as an old cracked sidewalk in a deserted coal town in Ohio. Sometimes it’s too much. Sometimes it’s not enough. But there it is. And that’s what matters most.