Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears.  But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it.  And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is  now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.“

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCH to handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things  — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them and their spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… and their blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGER because they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.

Back again – with lots more work to do

Back at it

It’s been about a week since I was last able to write. I’ve been traveling out of the country, as I did about six weeks ago. This trip was not nearly as successful as the last one. Well, in some respects it was — in that I was able to make some good connections with people pretty high up in the company. But in terms of working with my immediate team… not so much.

The new team I’m supposed to be a part of was pretty cold towards me and the other coworker I traveled with. So, the warm welcome from before was pretty much rescinded, and it just left a bad taste in my mouth.

Not to worry, though. I have other ways I can make the most of this situation. If I let other people’s bad behavior put a crimp in my style, then it’s my bad. It just can’t mean that much to me. At least, that’s what my objective mind tells me. My subjective mind that wants to prove that “I can do it” and wants to be on top of everything and have everything go my way, is really struggling with this shift in dynamics. It feels like I’ve failed. It feels like I’ve done something wrong and I need to fix it. All my fault. My doing. My bad. Yada-yada-yada.

Yeah, the “you’ve done something wrong” voice is loud and clear in my head, and I can’t seem to get it out. I’ve tried, but it’s a real bitch.

What I really need is a long hike in the woods. Something to get me out of my head and remind me that I am home again and spring is on the way. I need to get more exercise, period, since I didn’t get a lot while I was overseas, and I ate a lot of local desserts which tasted great but haven’t done my body much good. I need to get the circulation pumping and move some of this on through. Clear my head. Get my house in order.

One thing I did manage to do while I was away was watch some videos of TBI rehab pioneers who seem to have a pretty good idea about how TBI works and can affect your life. I found some videos of George Prigatano and some of his other colleagues at the 1st International Brain Injury Conference. He has some great things to say about the role of psychotherapy in dealing with brain injury. One of his colleagues, Harriet Katz Zeiner, talks about CRATER therapy, which – as I understand it – is a way to structure life after brain injury in ways that require less from an impaired memory, to work with survivors and their family members to support and monitor progress, and also to head catastrophic reactions off at the pass before they hijack the whole recovery process.

It’s interesting — in the past four years, I have had huge improvements in my anxiety level. I wasn’t fully aware of the intensity of my anxiety up until a couple of years ago. For years, I thought that my outbursts and freak-outs and melt-downs were totally justified because things just got so incredibly overwhelming for me, and I couldn’t — just couldn’t — deal with them.

Getting too much information to process all at one time… being put on the spot and not feeling up to the task of sorting through it all and dealing with what was going on… being challenged and taken to task and pressured… it set me off.

When I was with people in a work setting, I would just check out or walk away — on a small scale and also on a large scale. I think a lot of my job changes were reactions to things just getting too overwhelming for me, so I couldn’t deal — even if they were going right — and I “moved on to better opportunities.” On a smaller scale, I can think of countless times that I just bagged something — just quit a task that I was supposed to complete, be it a chore that my parents asked me to do, or a project that I was given at work. Either way, the result was that I just quit. Just bagged it. Fuggedaboudit. What-ever.

In my personal life, if I got too challenged and too put-upon, I would retreat into my “strong silent type” role, or I would blow up and go off on whoever was pressing me. And the people I would go off on, would get so freaked out by the intensity of my response that they became afraid of me, treated me like I was a threat. And that didn’t do much for my self-perception and self-esteem.

Then I realized that I was doing all this — you’d think I’d get a clue that this was happening with me, right? But it just didn’t register as something that wasn’t 100% justified, and that I might be over-reacting and going off for no reason. I have friends who have anxiety issues and after talking to them, I thought for sure that it was pretty much that this behavior was an anxiety issue with me — that it was psychological, being related to my thinking and how I was choosing to react to situations around me.

And that’s how I’ve been thinking about it for a couple of years, now. It’s been helpful to have that kind of mental construct. And when I look back, I can see so many instances where I got anxious and either ran from something or someone that overwhelmed me, or I lashed out and attacked.

The thing is, there was this little piece that seemed to be missing, and I found it during my trip. The missing piece, I think, is what they call the “catastrophic reaction” — an emotional outburst (sometimes accompanied by physical acting out) that is way out of proportion to the situation at hand. Sometimes, it’s an extreme reaction to an imagined problem that doesn’t even exist. Some examples from my own life — cursing a blue streak and throwing and/or breaking things when I drop something, verbally attacking someone who is just making me a little uncomfortable, or flipping out when things don’t go the way I expect them to.

That pretty much describes my behavior for years – being an unpredictable powder-keg who might say or do just about anything, if things don’t go my way.

And it comes with a ton of anxiety.

But why? What’s the big deal? Why am I so on-edge over things? Whence the anxiety? I’ve puzzled over that for quite some time, unable to see why I should be so anxious, and why it has really increased over the past years. I didn’t used to be so anxious, but “all of a sudden”… It didn’t make any sense to me. I know that TBI can seriously mess with you and your sense of self and make you incredibly anxious and self-doubting. But there was a whole concept that was missing… something that brought it all together — and I found it over my business trip:

The Catastrophic Response.

I want to write more about this right now, but I’m pretty jet-lagged, and I need to take a walk. I need to take care of some things around the house, now that I’m home, and I need to give my brain a rest, so I can function well today – and beyond.

Bottom line: This Catastrophic Response (now that I have a name for it) has been wreaking havoc with my head and my life for a while. It keeps me from approaching the things in life that I want to approach – including discussions I need to have with my neuropsych about my freak-outs and behavioral issues. It keeps me on tenderhooks of anxiety and avoidance, and it keeps me from living my life.

Seriously.

And I need to do something about it. Now that I’m aware of it, I need to do the work to address it.

So, I shall — by taking myself outside for a long walk in the woods. That should help a few things…

How Traumatic Brain Injury (TBI) May Affect Violent Behavior

Interesting and important video:

Causes of violent behavior after TBI: damage to the parts of the brain that inhibit “wild animal” behavior, fatigue, agitation, un-managed anger, and a host of other issues. Concussion can cause it, along with more extreme kinds of brain injury, both traumatic and acquired (such as stroke).

Medication is a possible intervention, and so are a variety of other approaches, including mindfulness training, behavioral modification, and developing additional coping skills.

Taking the edge off

Sometimes you just gotta let it go…

Few things in my life have been more of a roller-coaster than this TBI recovery business. I wrote recently about feeling like I was stalled – stymied – unable to move forward. And it felt pretty rotten. I have been feeling really down on myself, lately, and it hasn’t been helping me at all. The worse I feel, the worse I do, generally… and then I feel even worse. It’s a downward spiral that usually has its roots in fatigue and stress and me believing everything that goes through my brain.

You’d think I’d realize by now that my perceptions are not always consistent with the truth of the matter… I know my brain plays tricks on me. I know it blows things out of proportion. I know it loves to get worked up and all stressed out, because it loves the feeling of that rush, and it doesn’t feel awake without it, sometimes. But when the agitation gets going, the first thing I do is start listening to what my brain is telling me — which is the last thing I should do. I should really listen to what my mind has to say. I guess I need to keep learning that lesson.

Heck, maybe I should make myself a sign that says, “Don’t believe everything you feel.”

I think I will. Put it where I’ll be sure to see it on a regular basis. ‘Cause falling for what I feel is one of the biggest sources of pain and complication and suffering for me, that I can think of.

Anyway, it occurred to me not long after I’d written the post about feeling stymied, that I am actually doing really well in some truly substantial ways – the main way being, I’m a LOT less “hot” and reactive than I have been in the past — even in the recent past. I’ve recently started doing my conscious breathing again, and I’ve been incorporating it into my everyday life, taking a break to breathe and relax when I sense things are getting really tense. And I have to say, it feels pretty good. AND it takes the edge off my hot-headedness.

As an example, I was washing up dishes the other day, when my grip slipped on the dish I was washing and it clanked loudly on the bottom of the sink. A number of things happened that in the past were sure to set me off: I lost my grip on a heavy dish, running the risk of breaking it… my grip was slippery, which is a strange little stressor for me — if I don’t have a firm grip on something, it sets me on edge… there was that loud and startling “clunk” that really threw me off and sparked a little “alarm wildfire” in my brain. I’ve been having a lot of vertigo, lately, and it’s stressing me out, making me even more susceptible to flare-ups when simple things like this happen.

In the past, I would have freaked out. Lost it. Started banging things around and cursing and then getting really down on myself for getting so bent over such a simple thing. Few things kill my self-respect like blowing up over little things like losing my grip on a dish I’m washing… or dropping something, or not being able to get a hold on something — and these have all been happening to me a lot lately.

But this time, I handled it. It seems like such a small thing, but it’s huge for me. I just stopped and took a long, slow breath. I relaxed my tense shoulders and cracked my back (all I have to do is lean left or right, and the “popcorn” starts to pop in my spine). I just took a little break to gather myself, and when I went back to washing, not only did I feel calm and together, but I felt more calm and together than I had all day.

Magic. At least, that’s how it felt. But it’s actually more science than anything else — and it’s repeatable. I’ve been doing it, on and off, for the past several weeks, and while I’m not 100% successful at never ever blowing up over stupid sh*t, the fact of the matter is, I’m 5000% better than I was, several years ago. Just taking a breath and stopping and relaxing — stopping that chain reaction of WTF?! before it had a chance to get started — got me back to where I wanted to be.

And even though the vertigo is still a problem with me, I have far less anxiety and anger and frustration than I had in the past. I’m breathing consciously more often, in the course of everyday stresses, and I’m taking breaks to compose myself in the face of seemingly insurmountable challenges. I’m giving myself a chance to feel something other than the perseverating junk that gets lodged in my system, and I’m consciously smiling or laughing at situations that are usually great reasons for me to get worked up and bent out of shape — often over nothing. Just getting out from under the little black clouds that seem to follow me everywhere, even for a few short moments, has been helping a lot. And a simple smile — even if no one is around — has the surprising ability to change my perspective just enough to find something else to focus on — besides the WTF?!

Not freaking out over losing my grip on a dish… not blowing up over every little thing… actually feeling relaxed in the face of stress and drama… what a concept.

I could get used to this. It feels pretty awesome.

 

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.

Patching up

Fix it, don’t throw it away

Okay, it’s Monday. I had a nap yesterday, then ended up staying up later than I should have, watching television that is NOT improving my life

Oh, well. So it goes. I did actually get some good things done yesterday. I got the biggest things handled that I needed to – and I finished some things that I was putting off, and I was going to put off till next weekend. Some other things I forgot, but that’s okay.

I woke up yesterday feeling really out of it and wasted — almost hungover, except I wasn’t partying the night before. I actually got in bed at a decent hour on Saturday night. But I woke up wiped out with a sick headache. In the morning, I read for a bit and wrote a little bit and I tried to do some studying, but that was a lost cause. So I went for a walk in the woods, and that helped me at least get some exercise and move the “sludge” through my system. I also had a chance to stop and chat with a couple who were hiking into the woods in search of a geocache. I got to tell them a bit about the place and give them better directions than the maps posted at the head of the trail did.

That was one of the high points in my morning, actually. They were an older couple and they looked a bit intimidated by the situation, but I managed to chill them out and get them laughing and looking forward to their hike, instead of being intimidated and confused. Where’s the fun in dreading you hike? You should enjoy it! And I helped them get on their way.

When I got home, I was going to do some errands — run to the hardware store to pick up a new rake, glue to fix my boots, and a bolt for my pole saw, so I can trim my trees. I had a list with me, but some of the items I decided not to get because they’re too expensive, and I forgot to put the rake on the list. The rake was the main reason I was going, because my yard is just too big for the standard-issue width rakes — it takes me forever to gather all the leaves when I rake. I have a leaf blower, which I use sometimes, but a rake is actually quicker for me. And on top of it, I don’t have to deal with the noise, which gets to be way too much for me.

This time of year tends to really push me, anyway, because there’s so much work to do — AND all the leaf blowers are going, which is incredibly hard on my ears and my head. Come to think of it, that might be part of why I have such a headache, these days — all the leaf blowers constantly going. Oh well, so it goes, this time of year. All I can do is make sure I get enough rest so I’m less sensitive, and wear some ear protection when I am working. But geez – the constant whine of them in the background, everywhere I go, is too much. It makes me yearn for a time like on that t.v. show Revolution, when all the electricity goes out all over the planet. Just kidding — almost.

Anyway, I got to the hardware store — and I remembered to take the bottles and cans I’ve been meaning to return. I also managed to take the bag of canned goods that I’ve been meaning to donate to the food pantry. There’s a collection bin in the store where I return my bottles and cans. So, I had three things I needed to do:

1. Get a rake and a bolt and some glue at the hardware store
2. Return bottles and cans
3. Drop off the food for the collection

And I managed to do them all, even running late and being just under the wire with when the hardware store closed. I was pretty smart about the hardware store (my shopping list inconsistencies aside) – I actually took the pole saw with me, because I had no idea the exact size of the bolt I needed, and I couldn’t afford to make trips back and forth. It worked out, too — between me and the fellow who was stationed in the hardware section, we found the right size, and I picked up five bolts and five washers. Then I got my glue and took off for the grocery store across the way with my bag of bottles to return and a sack of canned goods to donate.

The bottle return was busy and loud, and people were impatient and pushy. I was already foggy, and it kind of threw me into a tailspin – between the noise of the plastic being crushed and this one individual standing right behind me, rushing me to get done with what I was doing. I was just trying to get the bottles in the machine, which is harder to do than you’d think, when you’re struggling with all the noise and being rushed by some a’hole who thinks they’re more important than you. Geez. You know, thinking back, that 5 minutes in the bottle return was one of the hardest episodes of my day. I was getting seriously tweaked by this individual, and if I’d been less focused on what I was doing, I probably would have gone off on them and ended up in a fistfight. I’ve been feeling increasingly combative lately, probably due in part to the sudden jump in the pain I’ve been feeling. But I was so busy just trying to deal with the uncooperative friggin’ recycling machine, I had to stay calm and not get aggressive and confrontational with this individual, that I just put my head down and pushed through it, and got it all done without a fight with this person.

Then, as I was getting into line to cash in my slip for the bottle return, I realized I had forgotten my rake – the whole reason I’d come out in the first place. I was so caught up in the drama about the bolt and the glue at the hardware store, that I completely forgot my rake. Because it wasn’t on my list. I had just expected to remember it. Yeah, right – will I ever learn? And part of me felt like, “Screw it, forget about the rake — that’s embarrassing — the guy asked you five times if there was anything else you needed, and you swore up one side and down that you were all set – and now you have to go back like an idiot to get the #1 thing you went to the store to get in the first place?”

But getting the rake was more important than looking good, so after I returned the bottles and cans and dropped off the canned goods, with 10 minutes to spare, I walked back to the hardware store (which is in the same shopping center as the store). I swallowed my pride and found someone to point me to the rakes, and I sorted through the bunch of them — looking for the biggest, widest one they had.

I combed through the collection and thought I found a really good one, then checked out and headed out to my car. The store was closing in 3 minutes. But as I was situating the rake in my vehicle, I noticed that the handle was damaged — a big chunk of it was cracked off, near the end.

My heart really sank, because the first thing that came to mind was, “Okay, not only are you an idiot for forgetting that you needed a rake, but you also picked one out that is broken. Any fool can see that it’s eff’ed up, but you pick it out like you’ve got good sense. What is wrong with you?!” And the thought crossed my mind to just take it home and deal with it. Or wait till another time when I wouldn’t have to look the folks in the store in the eye and show them how dense I was — yet again. If I waited a few days to bring it back, they might forget me completely and not remember that I was the idiot who swore they didn’t need anything — only to return 10 minutes later.

But then I thought about the coming week, and I thought about the rest of my day, and I thought about what it would take for me to do that — I would have to keep the receipt and remember where it was, in a few days’ time. I would have to make time in my crazy schedule to come back when the store was open. I would have to negotiate some sort of social interaction to convince the folks at the store that the rake was already defective when I got it. And it would be a huge friggin’ mess that might never get handled. And I’d probably end up keeping defective equipment, which would be a constant reminder of how I couldn’t manage to simply buy a rake on a Sunday afternoon.

So, again, I swallowed my pride and went back inside the store, obviously holding up the folks who were hanging around the entrance waiting to close up. I showed the rake to the cashier, and I headed back to pick out another one. I knew they were closing up, but I made sure I got one that had a good handle, and in another few minutes, I was on my way back home — to rake.

All this time, my head was full of all kinds of frustration and incrimination about how stupid I was, and how dense I was — really out of proportion to the situation. It was pretty noisy in my head, and the noise wasn’t good. I could have saved myself a ton of hassle and frustration and discomfort, if I’d been able to quiet it down — and I probably would have been able to see that the first rake I’d picked out was defective, if I hadn’t let the pushy individual in the bottle return get me all wound up. But thinking was not my strong suit, yesterday. So, I just drove home and got to work, moving leaves. It was getting pretty dark, by the time I finished – and I still have a lot of raking to do. But at least I made some progress. At least I managed to move some leaves. And I got my rake. And my bolt. And I fixed my pole saw, so now I can trim my trees, which is good. I also got the glue, so I can fix my favorite boots. And on top of it, I also patched up some of my spouse’s clothing. I can cut and sew a denim patch on a pair of old jeans like nobody’s business – and if I say so myself, it looks pretty cool, by the time I’m done with it. Both of my parents are skilled at patching things, so I must have gotten it from them – plus, I hate to throw things away and I love to repair stuff so it’s good for years and years.

And that’s the thing – so many times in the course of my days, I say and do things that just aren’t right. Especially when I am tired and/or I’m struggling with my sensitivities, I get a little bent and screw up things that you’d think would be easy for me. And I have to regroup. Figure something out. Make up for oversights and lost time and all the other stuff you’d think would come easy. People say I “shouldn’t” have any problems with stuff  ’cause I’m “so smart”, but it’s not intelligence that’s the problem — it’s logistics. Figuring out how to do things in which order, and figuring out how to make right the things that go wrong, whether they’re little details like putting a bottle into a recycling machine while someone is breathing down your neck, or missing a broken spot on a rake handle. It’s all the extra stuff… like sorting through all the input, managing the stimuli, dealing with the pain… yeah, the pain — I’ll talk about that later, ’cause it’s back, in a very big way, now. Intelligence is the least of my worries — basic, dense, step-by-step stuff is the problem.

But I do manage to figure out how to deal — especially in the moment, which is when I have to do it. I don’t know if I’m going to remember things later, or if I’m even going to make time to do them, so I have to do things NOW. In the moment. When they come up. And I have to acquire more skill at putting aside all the chatter and drama that’s clattering around in my head, just so I can get stuff done.

I’m actually doing better at that than I did in the past. And despite all my internal drama yesterday, with the pain and discomfort and frustration, I did achieve something I wasn’t going to get done maybe till next week — buy my rake, fix my pole saw, get glue for my boots, return the bottles and cans, and drop off the food for the food pantry. I didn’t flip out and assault the individual who was breathing down my neck at the bottle return. I didn’t lose my resolve and run away from that rake return with my tail between my legs. I handled things in the moment, and I handled them well, despite my internal experience.

That’s what I need to focus on — the final, end result. Not the things I experienced on my way there.

Yesterday felt really shitty, for the most part. But the end result was rockin’. And that’s the thing that really matters. For all the pain and awkwardness, sometimes I really do rock.

James Cracknell: Hopefully, we’ll get back to where we once were

James Cracknell and his wife Beverley Turner have written a searingly honest account of the impact his devastating brain injury and personality change have had on family life

“You’re not the man I married.” Of all the hard truths James Cracknell has had to face since his brain injury, those six words are the hardest. His wife, Beverley Turner, isn’t being accusatory when she describes how his personality has changed, nor is she insulting his masculinity. They both know it is the truth.

“Since the accident, she’s been the hardest person on me,” he says. “Challenging me in a way I’ve needed to be. She makes me angry and frustrated. Sometimes I don’t understand why she’s so hard, when I feel she should be the one who loves me most. But it’s because she loves me that much – I’m hoping – that she doesn’t hold back. I take a lot of strength from Bev as well as flak.”

On the other side of the kitchen table, tender but implacable, Bev listens like a mother. She is watchful. Their troubles seem to have imprinted nothing on her features. It is their 10th wedding anniversary. His card – scrawled “Hey baby, we made it!” – suggests this was not always the predicted outcome.

Read the rest here >>

Lost & Found: What Brain Injury Survivors Want You to Know

Here’s some great advice for friends and family members from a traumatic brain injury survivor and support group leader:

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Great Read About Concussion Experience- from the Globe And Mail

Helmets help – put one on

Voyages in Concussion Land: the homeless, Sidney Crosby and me
by Tabatha Southey

Nearly two months ago, I was on a return visit to the emergency room, to deal with a concussion I had sustained during a bike accident. A doctor studied my MRI results for a while and then he talked to me, as another doctor and a nurse had already done, about Sidney Crosby.

Everyone in Concussion Land talks about Sidney Crosby. I heard one brain-injury patient who had been in a car accident several years earlier say, “Thank God for Sidney Crosby. Before Sidney, people just stared at me blankly when I told them about my injury. Sidney put this thing on the map.”

Several people in the waiting room at the clinic nodded. One woman added quietly, “Do you find you’re more emotional now than before your concussion – that you cr …” And before she could finish saying “cry,” all four patients in the room burst into tears. Which I found hilarious, but I was crying too.

Read the whole article here >

A different kind of sleep deprivation

Getting up… or lying down…?

I’ve been thinking some more about the article in the New York Times — Rethinking Sleep — which introduces a different way of thinking about sleep: one that is actually more in agreement with what I’ve found to be true — that it’s actually more helpful to sleep less time more often during the day. And I’ve been realizing that getting hung up on other people’s definitions of what works, has cost me a lot.

Sleep has deprived me — at least, my approach to sleep has. My attitude has been that I have to have enough “good” sleep, or I won’t be able to function. My belief has been that fatigue impairs me, all across the board… from impeding my thinking and comprehension, to affecting my behavior, to making me more irritable (which can’t be helped), to making me feel like crap. And when all that’s the case, then I am less capable, I am less able to function, I am less talented and intelligent and resourceful than I could be if I were just rested.

But here’s the thing — I’m always going to be tired. I’ve realized that, over the past months, especially during my most recent vacation, when I had a week and a half to sleep and rest, but I spent just as little time resting (even less) than I do under normal conditions. There is simply too much to experience, too much to enjoy, too much to explore, to spend my time sleeping. Maybe others can, but I agree with one of my favorite Facebook destinations — I Cannot Go to Bed – There is Epic Shit Happening on the Internet. There is just so, so much to see and think and do. One of the mantras in my head has been (secretly, because I don’t want to be maudlin) — “I’ll sleep when I’m dead.” Because there is so much living to do, and none of us knows how much time we have left.

Not only is there so much to do and see and experience, but I also put myself 100% into most of the things I do, and when you’re going at top speed, starting from when you get up, you’re going to get tired. You just are. In fact, I’m suspicious of people who aren’t wiped out by 2 p.m. What have they been doing? Have they been doing anything at all? And if so, why are they holding back? Nobody has unlimited strength and endurance. Something’s gotta give. If folks aren’t utterly wiped by early afternoon, I figure they’ve been skating right along, taking their sweet old time, and never mind what actually has to get done. On time. Right.

What — me have an attitude? Maybe a little bit. Okay… yeah, I’m busted.

Nothing peeves me more than people who slack and don’t do diddly with their lives — not only because it pisses me off that I have to work so hard, while others laze around, but also because it seems like such a monumental, terrible, horrible waste of time. We are given certain talents and abilities, which nobody else on earth has. We are all needed, we are all valuable, we all have something to contribute, something to give. And yet countless people sit around and do absolutely nothing with what they have. It especially makes me insane when I see people who are out of work, who can’t find jobs, who sit around and do nothing all day, when they could be out volunteering or doing something truly useful with themselves to give back and be part of something larger than themselves.

I mean, there is NO excuse for that. It’s one thing, if you’re seriously injured or seriously impaired, but even then we can still do something useful and valuable with ourselves, with our lives.

And yet, how many of us sit around on our asses, watching mindless, pointless television, playing games online, frittering away our hours chatting with friends on the phone, and so on? Seriously, no one should be out of “work” because there is so much that needs to be done, with or without a paycheck. Honestly, people. We need to get a grip.

But then I think about the mindset that I was laboring under for quite some time — an idea that stopped me in my tracks, so many times, and produced the kind of behavior that I complain about seeing in others — the choice to do less, not more, the choice to favor and coddle oneself, instead of getting outside yourself and doing what needs to be done.

What was holding me back was the idea that I had to be well-rested in order to be functional, in order to be healthy, in order to use my brain. So, if I wasn’t rested, I was screwed, basically. If I was tired, I wasn’t thinking or acting or being the best I could be — in fact, I wasn’t capable of it. That was the “given” in my mind, which kept me and my dreams and hopes and activities tamped down and kept me always on edge, watching for lapses and shortcomings, due to fatigue.

Thinking back, I believe I’ve spent a lot of time commenting on this blog about being tired, being fatigued, and making that the reason (excuse) for my shortcomings. It’s been very convenient, too, because that’s the information I received from my NP, and it’s also been what I observed in my life. When I was tired, I could see issues with my thinking and cognition and behavior and ability to function. When I was tired, I had outbursts and meltdowns, temper tantrums, and freak-outs. So therefore, “good sleep” must be a pre-requisite for me to have any kind of a life, right?

Well, maybe. I mean, having good sleep is helpful, and I tend to feel absolutely amazing when I’m well-rested. But seriously, what are the chances of that always being the case? I get tired easily, I get worn out. I run myself hard, and I use myself up on what I’m doing. That initial feeling of good-ness goes away pretty quick, and then I’m left with nothing other than feeling down, and feeling down on myself about it. So, that’s only partly helpful, when I think about it.

So, relying 100% on my “sleep foundation” to function isn’t very practical. Or, it’s practical for maybe 30 minutes out of every day.

And what about the rest of my day? What do I do then? Just stop living my life? “Not a chance,” I like to tell myself. But that’s what I’ve kind of been doing. I’ve been giving up on doing more, doing better, learning and improving, because of being tired. And on top of it, when I do that, I stress myself out, because I’m telling myself “I can’t” when that’s not necessarily the case. I have it in my head that I’ll be more restless, less able to keep focused, less able to perform, more irritable, harder to handle, less capable, etc.

But that’s just in my head. Really and truly. Because when I think about it, the real mythology is that being “well-rested” is going to change anything for the better. As a matter of fact, there’s no guarantee of that. I’m just as likely to screw up, when I’m rested, as when I’m not. I’m just as likely to fly off the handle when I’m not tired as when I am, and I even get MORE agitated when I’ve had a full night’s sleep.

The thing that turned things around in my perception was realizing that even when I AM totally rested, I still mess up. I still make mistakes. I still overlook things and screw things up for myself and people around me. Even under optimal conditions, I never know if my performance is going to be up to snuff. I still need to be able to adapt and learn and change and grow. Being well-rested is no guarantee of anything.

So, where does that leave me? Basically, it leaves me looking for other alternatives to keep going, to keep focused, to keep present and on my game. I’ve tried coffee, but that fries me if I have too much. I can’t do all the sugar and carbs, because that balloons me up to an uncomfortable weight. I’ve tried exercise, and that’s helpful, but it can be difficult to work out as much and as well as I’d like, with my weird-ass schedule (which I am hoping will change before too long). Where can I get the resources, the fuel, the drive, to keep going?

Well, I’ve realized something — I have a steady stream of energy and motivation available to me at all times — and that source is pretty constant. It’s in a couple of forms — first, in the body fat I drag around with me — that’s a ready energy source that my body automatically packs on, which I can tap into. The more demands are made on me, the more my body makes provisions for it by adding fat — which I can burn to keep going.

The other source is the constant restlessness that’s directly related to how “awake” my brain is — the “tonic arousal” as they say. I am pretty constantly jazzed up over something or another, and my energy levels have been marveled at by more than one person. And the more tired I am, the more energy I actually have. The trick is, making sure I stay focused on my goals, instead of being pulled off in all directions over little distractions or anxiety about not being able to do something.

See, it’s the anxiety about my supposed limitations that keeps me down and keeps me concerned and worried, and also cuts into my focus and attention. Anxiety about being incapable or flawed or damaged or broken keeps me on edge and makes it pretty difficult to keep things simple and just relax, so I can learn my lessons. That tension literally cuts off my ability to learn and grow and adapt, to see myself accurately and self-assess my performance to the best of my ability. I cut off my nose to spite my face, by being so freaked out about not getting enough sleep.

The thing is, “well-rested” is not the beginning and end of it all. It’s just one part of the whole experience for me. It’s really what I do with my rested-ness that makes the difference — can I learn? Can I grow? Can I change? Can I adapt? And how well?  And as a matter of fact, even where sleep fails me, I can direct the constant restlessness of my brain towards doing exactly those things – learning, growing, changing, adapting… being flexible and being able to modify my choices and actions when I see they’re not working out.

My tonic arousal and restlessness — if it’s not directed — can be a liability. But if it’s directed and used properly, it can be a tremendous asset. And that’s something I haven’t actually factored in over the past years of learning to live with TBI. It never occurred to me that the restlessness might actually come in handy, but it does. It truly does. It’s a constant source of energy for me, a constant source of change and movement. And if I can simply stay motivated and positive, it can be a tremendous force for positive change in my life.

Instead of making it my enemy, I need to make it my friend. I need to understand the dangers of it, and also the benefits, and act accordingly. I need to be bigger than it all, and direct it the way I see fit. Rather than being its servant, its slave, I need to be its master. And just get on with my life.

Now, granted, I still do need to rest. This is not a substitute for sleep or rest or anything like that. I still need to get to bed at a decent hour — didn’t do so great last night: I ate some ice cream and checked Facebook before I went to bed and ended up laughing hilariously for half an hour over something that struck me as incredibly funny. What’s more, I composed whole essays in my mind about this photo I saw, and in my mind I was already going on a speaking tour to discuss the socio-cultural ramifications of the lessons we can learn from that photo.

All this, in the wee hours of the morning – not at all helpful for my sleeping.

But back to the topic — I do need to keep on top of my sleep, but I have my backup plan that takes the pressure off me, in the case I don’t get enough sleep and I’m feeling behind. My body will more than make up for what I’m missing in sleep, with a combination of adrenaline and all the other biochemical substances that spur me to action. I might not be as cognitively sharp as I could be, but I’ll definitely have the energy to just keep going, no matter what. And I’ll have the resources to observe and learn and adapt, even when I’m tired. Of that, I can be sure.

Because my body has adapted that way. And I can take advantage of that adaptation.

Again, like I said, this is not a substitute for good sleep. But it is Plan B, for those times when I’m running low on energy. Our systems are built to self-sustain, and we rarely push ourselves to our true limits. Few of us even make the effort to find out, what all we’re capable of. And I’ve been using poor sleep as an excuse to do just that. I can bitch and complain about other people being lazy, but it could be that they are laboring under the same kinds of mis-perceptions that I was — that something innate to us is limiting us and holding us back, and there’s no point in actually moving on and doing anything, because we are so fundamentally flawed. Broken. Damaged. Worthless.

It’s not true, of course, but that’s what we tell ourselves. Until and unless someone else comes along who’s even worse off than us, and we see that they’re actually doing something with their life. Until and unless we take a long, hard look at ourselves, take a step back to see things for how they really are, and then make the necessary adjustments to do better… to live better… to be better.

So there it is. Sleep is good. Sleep is great. But I have a backup plan for when I don’t get enough. I don’t have to let fatigue stop me. I can just keep going. I might feel like crap and not be 100%, but I can at least keep going, lose myself in my work, and find something about myself I never knew was there before.