A good night’s sleep… and a new direction

zelinsky-eye-info
Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

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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.

Reblog: Onions, Diagnosis, Attention and Grief

A great piece on grieving, and how it affects us differently.

ADD . . . and-so-much-more

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Dealing with Grief is like Peeling an Onion

(c) Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Part 1 of a two-part article in the
Grief & Diagnosis Series
– all rights reserved

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You will get more value out of the articles in this series
if you’ve read Part 1:

The Interplay between Diagnosis and Grief.
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An article entitled Helpful Tips for Coping with Grief, available on the HealthCommunities Website, asserts that “Grief is a normal response to loss.”

By “normal,” no doubt, they are referring to a state that is to be expected in an emotionally healthy human being.

The ten paragraph, ten part, ten web-pagelet article goes on to say quite a few helpful things about grief, many of which I am…

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