And in the end, we learn…

Some days you nail the holidays, sometimes the holidays nail you.
Some days you nail the holidays, sometimes the holidays nail you.

This trip to see family for Thanksgiving has been chock-full of lessons. I’m still sorting them out. Some of them, I may forget, by the time I get home, so I’ll write them down here, and come back to them later.

  1. Having a perfect life is no guarantee of happiness.
  2. The people who appear to be the most powerful and privileged are often suffering under terrible burdens. Sometimes it’s their very burdens that drive them to be more poweful and privileged than anyone else.
  3. People who are innately talented and sharp, don’t always end up in the best circumstances. People who work-work-work their asses off can accomplish great things.
  4. The people who seem to be the most wealthy, are often very poor in their own hearts.
  5. It helps if you’re attractive and have a ready smile.
  6. People are surprisingly judgmental of others who are simply different.
  7. No matter where you look, there are people in some kind of need.
  8. People dislike having to question their most fundamental beliefs. They’re a whole lot easier to get along with, if you pretend to agree with them — or at least don’t judge them.
  9. Most people I know are very set in their ways about how women should act, and how men should act. Come to think of it, they’re very set in their ways about how “normal” people should act.
  10. It usually pays off to keep your head about you and maintain a cool demeanor.
  11. If you can’t do #10, step away. Give it a few minutes.
  12. Getting enough sleep, drinking enough water, and eliminating regularly, will do wonders for your interpersonal relationships. It’s all about the flow…
  13. Life is short. Be kind.
  14. Sometimes, all it takes to get people back on track in mind and spirit is a long card game.
  15. Winning a hand of cards is restorative. Losing gracefully, four hands in a row, is ennobling. Having a good laugh at yourself being a sore loser is good for everyone at the table.
  16. Many things are awful. But they pass. It makes no sense to let awfulness get hold of you and trick you into thinking it will last forever.
  17. Everything looks easier in hindsight.
  18. All those old resentments I held against my in-laws for having so much more than me, and providing so much more to their kids, now pales compared to the peace I have in my life. They don’t have that peace. Their opulence is not saving them.
  19. My “country hick” insecurities around my in-laws are still there. I still feel like an idiot when I am around them.
  20. However, I have not understood the source of my insecurities, till recently. I thought, for years and years, that I was less intelligent than they, and I was too slow. As it turns out, by the time we reach their home, I am usually exhausted from driving, my sensory issues are out of control, after dealing with my own family, and I am literally not myself. My ears are ringing, I’m slowed down by fatigue, my noise and light and smell and touch sensitivities are all on HIGH ALERT, and I can’t understand what anyone is saying because the television is usually blaring. It’s a total onslaught of sensory overload, which my in-laws have to immerse themselves in, because they are so deeply unhappy as they follow all the rules, and they need something to dull their intense pain.Their coping mechanisms make it very difficult for me to function. It’s not me, that’s the problem, it’s the environment.
  21. My in-laws are trapped in a “perfect” life, doing things they never really questioned, and their difficulties with that are simply too much for them to handle. They’ve decided to be happy, simply being successful and popular, everything looking good on the outside, but deep down inside, being so sad and lonely.
  22. My in-laws cannot accommodate people who are different. They get disgusted with people who aren’t functioning”normally” due to invisible conditions. They don’t understand how people can have limits that are difficult to explain, and you don’t live up to their specific expectation of how you “should” function, they can get pretty mean-spirited. Their intentions are good, but their follow-through sucks.
  23. My parents are surprisingly resigned to getting old and infirm. Well, my father is, anyway. He’s giving up and giving in… I read some things he wrote, and it makes me sad that he’s not fighting it more. He’s got a lot of years left in him, but he’s talking and thinking like he’s going to die before long. His handwriting has gotten noticeably worse over the past year. I think his diabetes is catching up with his brain function. And I’m literally not sure when/if I’m going to see him again.
  24. My family is much better at accommodating individual needs and limitations, than my in-laws. My in-laws think a pill fixes everything, while my family believes community fixes everything. Small wonder. We’re all a bunch of farmland hayseeds, here, and there are plenty of “neurodiverse” people in our midst, due to brain injuries, congenital defects, poor medical care, etc. There are a LOT of “different” people here, so folks know how to handle them, for the most part. And the social rules here are so strict, everybody knows what they should be doing in any given situation, so it makes it possible for people to function, without thinking much about anything. It’s interesting.
  25. Holidays are borderline hell for me. There is TOO MUCH ACTIVITY, and the expectations are too high. It’s TOO LOUD. Too many smells and changes in routine. I dread it. Every bit of it. Including all the parties and social activities. And the holidays are not easy for my spouse, either, who also has sensory issues but is less aware of them.
  26. Both of us struggle terribly, at times, so it’s important for me to keep my act together, so only one of us is going off the rails at the same time.
  27. I am so happy to be driving home today. It’s a full day’s drive, and we’re going to take our time. Get out and stretch. My left hip is killing me. Not enough exercise.
  28. I’m glad we made this trip. And I’m even more glad to be going home.

And now, it’s time for a walk.  A long, long walk, before I get in the car and sit for 9 hours.

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Two more days… then home!

Today we rest at my parents’ home, then we are driving home tomorrow… missing the worst of the Thanksgiving traffic.

I’m going to pause now for a Christian moment, since I have been surrounded by very religious Christians for the past 5 days… Praise God Almighty! Praise Blessed Jesus!

I only have another 30 hours to go (give or take) till I am back in my car and headed HOME to my own space, my own diet, my own schedule, my own life.

This really has been a very challenging time for me. The most challenging thing, by far, has been dealing with people’s prejudices and judgments. My spouse has been having some difficulties, being off their schedule — as have I. They’ve been tired and irritable and have not been thinking clearly or as mobile as one would expect. And both sides of the family do not handle that well. So, they are hard on my spouse, which is hard for me to watch. My in-laws, especially, are pretty judgmental, and they put all kinds of pressure on my spouse to DO SOMETHING about their condition.

Get up earlier each day.

Get regular exercise.

Get a hip replacement.

Go out into the world and do all the things that people without noise and light and scent sensitivities can do.

Of course, they know nothing about the strokes, seizures, cognitive impairment, and I’m not about to tell them that, because they are exquisitely attuned to finding the worst in everything, and trying to overcome it. They will pick out the worst piece of information (e.g., if the power steering fluid had spilled all over the exhaust system, our van could have caught fire) and then they dwell on that. That will become their mantra — Something Terrible Could Happen — and they will proceed to make every thought center around that.

Which is a really draining way to live.

And now that we are away from them, I can breathe. My side of the family is overwhelming in other ways – we’re about to start the day’s social overwhelm drama – so there’s not a ton of respite. But at least it’s not that constant dark cloud of risk management and imagined damage control. At least I’m out from under that.

So, what have I learned from all of this? It’s going to take some time to figure that all out, but one thing I’ve gathered, is that I have a very unique ability to see people for what they are and accept them for what they are… regardless of their perceived disability and limitations. I can see the goodness and strength in everyone, and I can see the hidden abilities they have, which are usually eclipsed by their challenges or shortcomings. I’ve known a lot of functionally limited people over the course of my life, and none of them have actually seemed as damaged or as strange as others said they were.

I have always been this way, perhaps because it’s what I needed most from others — but never got it. When I was younger, it got me in trouble because I was taken advantage of by people with ill intentions. It’s taken me years to learn how to discern and steer clear of the trouble-makers.

What I’d like to do now, is find some volunteer opportunities to use that to help others.

I have several free days my employer gives me to use for volunteer work, so for the holiday season, I think I’ll look for a chance to do that.

Everything can be used — especially the difficulties.

Onward.

 

 

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!

Getting my house in order

The pieces will fit together, if I pick and choose and let some things go.

Just got up from my afternoon nap. I had an early start today, waking up at 4 and working for a bit, before helping my spouse and some friends get out the door to go to a business event they are attending. Lots of movement, lots of activity, lots of coordination, lots of details to remember for things that had to be remembered.

After they got on the road, I took the opportunity to do some yard work. I usually can’t start yard work till late afternoon, because my spouse usually sleeps till 2 p.m., and they don’t much care for waking to the sound of a lawn mower or leaf blower. So, I had some freedom to just work, and I got a lot cleaned up. Then I had some lunch and ran some more errands, came back home, took a long, hot shower, and collapsed for almost 2 hours. I could have slept longer, but I decided against it. The days are getting so short, and I have a lot I want to be doing with myself, while there are still daylight hours.

Anyway, it’s better if I don’t sleep too long – I don’t want to hose my ability to get to sleep tonight. I’ve been waking up at 5 a.m. regularly, so the sooner I can get to bed at night, the better. Obviously.

Now I’m figuring out what I’m going to have for dinner. I think I’ll make myself some lamb, which my spouse doesn’t like, but I love. Times like these, when I’m flying solo, are perfect for me to eat foods I can’t normally have when I’m cooking for us both.

The one challenge with the lamb is that I’ll have to prep and cook it. I toyed with the idea of subsisting on crackers and caramelized onion goat cheese spread, which is like a crazy drug to me, for some reason. But I really need some protein. I worked a lot today, and I’m sure I’m going to be sore tomorrow. So, I need to get some meat in me.

So, lamb it is. I won’t have to hover over the stove, just prep it, put it in a pan on the stove, and set the timer. And get some more work done in the meantime.

I’ve got a handful of things I want to do with myself in the next couple of days — I’ve already done one of the big things: yard work. I also need to reconstruct my study, which I now realize has to be re-stocked with certain books I had taken away a couple of years back. I have a lot of books on my bookshelves which do not reflect where I’m at these days, or where I’m going. I’ve been back and forth about my next steps and where I want to go with my career, etc., and I’ve been clinging like crazy to the technical angle, like my life depends on it.

News flash – it doesn’t.  The technical angle is something I recognize and remember loving. But my career has moved on — and I need to just admit it and accept that. In fact, my career is very much in flux, right now, with nothing absolutely certain about where I’m going. The only thing certain, is that it’s in flux and it’s headed in some new direction that I still have to figure out. I have an idea about where that direction is — and if I can stop preventing that from happening with back-pedaling to the technical stuff every other day, so much the better.

Seriously. It’s like I have amnesia. I need to make a sign for myself

YOU ARE NOT A TECHNICAL WORKER BEE ANYMORE

And be done with it.

I guess I just get nervous and try to head back into the arenas where I used to feel safe and secure. The thing is, I felt safe and secure, because I knew what I was doing. That’s not the case, anymore.

Part of the issue is that I’m being contacted by old friends and colleagues who “knew me when” — before my fall, before my life fell apart, before I stopped being able to pick up new things at a moment’s notice and run with it. The inner workings of my brain are so very different, now, and none of them saw me go through that flame-out over the past 7 years. For all they know, I am still the technical whiz kid they used to know.

But I know better.

I guess I need to do a better job, too, of communicating to folks what my new life is. It’s kind of embarrassing for me to “admit” that I’m not highly technical anymore. And it’s also bothering me a good deal. But that’s the fact of the matter. It’s just how things are, now. Time to move on.

This is a theme in my life, these days — moving on. Getting my act together and just moving along. There’s a fair amount of grief that is going with this, because I’m having to let go of things that used to be such a big part of my life and my outlook. It’s like I have to stop hanging onto parts of me and my life that died years ago, but I have still been pretending exist. I’m kind of like one of those people who can’t let go of a beloved pet, so I keep their ashes — or their stuffed body — up on a mantle, so I think that part of them is still with me.

It’s kind of creepy, actually, now that I think of it.

Yeah, it’s time to get my house in order and let go of things. Just let ’em go and move along. Gid-along little do-gie and all that.

Because when I think about it, I have a bright and shining future ahead of me that’s well outside the bounds of where I used to function. I got into technology as a reaction to hating my old effing job that I had back in 1995, and it’s been good to me. But the changes over the years have not been positive and the job market has shifted away from me in a very big way. I need to move along in this new direction I’ve identified — do some good work, make some good progress, and let my life transform itself.

Hanging onto the past, no matter how well it once treated me, is no good for my future.

So, tonight after I have my lamb dinner, I’ll move the old books out of my study and make room for the new. It’s gonna be a whole new day.

Onward.

 

Making room for more

And so another small chapter draws to a close, and a new one opens. Today I am finally going to start my vacation. The past few days have been pretty difficult for me, being off work notwithstanding. Since Friday night, we have been hosting a friends, in one capacity or another — there’s the friend who showed up on Friday night and has been staying with us at the vacation rental, whipping up drama along the way and generally being underfoot. There’s the other friends who came out for the evening last night and had dinner with us. And then there are the friends who are on the phone, calling and checking in and needing something when we get back next week.

It’s been a rough several days for me, with Saturday through yesterday (Tuesday) not giving me much rest or a break from constant stimulation. And it’s been driving me nuts. I am so exhausted, my spouse doesn’t seem to get how fundamentally fatigued I am — not just today, but in general — and that I need rest and quiet for more than an hour at a time. And for some reason they don’t get the idea of long-term sleep deficit.

How ironic. When they are just a little bit tired from an exciting day, they will sleep for 12 hours and not think about it. But when I’ve been going full tilt boogie for weeks on end, with maybe 5-6 hours of sleep a night, they still expect me to be part of their late-night plans.

Frankly, it makes me want to divorce them. I can’t live the rest of my life exhausted, and I feel like they have just used me up and are ready to throw me away. I was so tired the other morning, after being constantly pushed, and being woken up at 5:30 by them being up and about after staying up all night, I just snapped and flipped out at them in that way that makes them afraid of me, and has them “handling me with kid gloves” for days on end.

I just need a break. From them. From the people. From the distractions. From the social activities that give me no enjoyment, only drag me down and make me feel broken and inept.

I need some solitude. But at the same time, my spouse still needs me to help them do the most basic things, like put on their shoes and eat regular meals, because they either cannot reach their feet from back pain, or they cannot be bothered to keep on a regular schedule.

I don’t know. I don’t want to sit around bitching about situations that I have helped to create. I’ll have to find a way to work with this, if I want this marriage to work. For the most part, it does, but there are some things that are so critical as to be non-negotiable. At least, they should be. Like getting adequate sleep and recovery time.

The real problem is not with my spouse, however. The real problem is with me – not being clear about what I need to do and have to take care of myself, and not speaking up for myself. It just depresses the hell out of me when I have to fight for something as basic as a good night’s sleep. It seems like the sort of thing that should be self-evident and go without saying. That, and routine.

But my spouse doesn’t see it that way. From their perspective, my need for structure makes me a “Nazi” and it ruins their spontaneous fun. They like to just go with the flow… as though the world were made up of limitless time and money and resources. And if they don’t get what they want, then it’s a cruel crime being perpetrated on them to make them unhappy. Everything is personal with them. And they get very peeved very quickly… and they’ve very vocal about it, as well.

The thing is, I knew a lot of this when we first met. And back in the day, it wasn’t a problem. It was just one of the things that made them… them. And I loved them for it. Time change and people change, of course, and ever since my TBI in 2004, I have had less and less patience for that kind of behavior. Also, since commencing my recovery in 2007, I have really changed a lot, becoming less and less like them, seeing how a lot of our behavior has been really unhealthy and outright harmful.

And my tolerance has dropped through the floor.

Which is never good. Ultimately, as much as I carp and complain about the traits and qualities of others, the real issue is my tolerance level, and my ability to take care of myself without someone else thinking for me. It’s just part of being alive and being an adult, of course. And it’s not like I’m being held against my will in a horribly abusive situation.

Far from it. I just need to tweak a few things and more actively manage my own fatigue levels.

I need to keep myself from getting this tired, this delirious, this fragmented. Of course, the past several months have been sheer hell, and those types of conditions don’t happen all the time, so this is a bit of an anomaly. I know how to recover from this. And I will recover. It’s just a matter of managing it better.

And also making room for it, when it happens.

Some of the things that have made this time even more challenging than it has to be, are:

  • I haven’t made sure that I got enough rest each and every day. I haven’t communicated clearly to everyone that I need to rest, when I need to rest, and I’ve pushed myself harder than I really should have.
  • I haven’t worked out with my spouse the “terms” of my recovery. My exhaustion has sort of blind-sided them, when it’s come up, because they think about their own needs 99% of the time, and if I don’t tell them over and over what’s going on with me and what I need to do about it, they get very angry and resentful towards me.
  • I haven’t made it clear to people just how exhausted I am — most of all my spouse. I’ve just been pushing myself on adrenaline, and at the same time my gears are pretty much stripped, I’m still exceeding the proverbial speed limit — in 2nd gear. To all appearances, I’m still functional. I can still drive. I can still walk a straight line. So, I should be fine, right? Not exactly. Judging by my appearances, my spouse has been very unclear about the problems I’m having, which has made it tough to communicate to them and manage their expectations and also carve out any type of relaxation time for my recovery.
  • I am still pretty much in denial about living with a narcissistic borderline sociopath who lies and cheats and steals to get what they want out of life, and lives on the edge because that’s the only way they can every feel truly alive.

The last point is the main one, which makes things difficult. I just need to face up to the fact that I am married to and living with someone who has been deeply, deeply wounded in the past, and is still hobbled by their scars. I cannot even imagine the hell they went through as a child, even from the partial details I know (which is not everything, because they can’t remember a lot, themself). Their old wounds refuse to heal — in part because from what I can tell, they cannot bring themself to face the whole truth about their family situation. And they keep going in spite of it.

That last bit is what I need to focus on — the fact that they keep going, no matter what. Because as difficult as it can be for me to live with them, they actually do a lot of great work with people. The work they do with others to help them heal has literally saved lives. And there are countless people with a similar background, who have been helped — really restored to life — by their influence in their lives.

And this is what keeps me in this marriage, continuing on, despite the harm and pain and struggle. Because what comes out of this marriage is life-giving and restorative for many, many people far beyond the domain of our relationship. And as much as I complain about their negative traits, the positive traits are what help keep me alive. I wouldn’t still be here, if it weren’t the case. In fact, this blog is happening and helping people, because of the stability and support that comes out of the good parts of this marriage. My spouse doesn’t know I maintain this (as far as I know), but the support they offer and the help they provide does keep me going.

So, this marriage isn’t just about us, it’s about the work that we both do. And the stability of this marriage, for all its ups and downs, makes it possible for us both to do our work.

The main culprit in this dynamic is intolerance, judgement and fear. It’s me getting uptight when I hear them making up stories to make other people feel better, or to get their own way. It’s me focusing on the negatives instead of the positives, and making things much worse than need be. It’s me not taking care of myself, not accepting the fact that I need to sleep — a lot — and I need to be proactive in my management of my own issues. It’s me not including my spouse in my recovery and recruiting their help in getting me back on track.

Yes, they do have some serious mental health issues. But at the same time, they do an awful lot of good in the world and they help an awful lot of people on a regular basis.

Nothing is 100% good or 100% bad. There are up-sides and down-sides to everything. I just need to find the up-sides and stick with them.

Because ultimately, making room for the “bad stuff” helps the good stuff happen all the more.

 

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

Remember – links on this site are dark grey to reduce distraction potential
while you’re reading. They turnredon mouseover
Hover before clicking for more info
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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

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

The Interplay between Diagnosis and Grief.
————————————————————-

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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In denial? It might be neurological

I’ve been giving a lot of thought, lately, to the subject of acceptance and denial of TBI-related issues. Denial is a big issue with lots of head injury survivors, and the inability to accurately self-assess can make lasting recovery difficult. It can make us reluctant to do the work required to achieve true recovery, because we simply don’t realize that we need to do the work. It’s not that we’re “in denial” because we’re emotionally ill-equipped to deal with the loss of certain traits we once had. We simply cannot conceive that there actually is something amiss with us. After all, our brains are telling us we’re just fine.

Give Back, Inc. has a good description of aspects of this issue:

The second, and most important, obstacle is the inability to directly perceive the effects of the injury. In traumatic brain injury (TBI), the brain does not feel injured. It rarely hurts or feels strange, and relatively few symptoms are obvious to survivors. Most survivors overlook the errors they make because of the lasting effects of their injuries. When an error gets noticed, most survivors don’t realize that it was caused by their own, defective thinking and self-control. Even when a survivor recognizes the mistake, the injured brain usually serves up excuses that prevent learning about the injury. Serious physical disability is unusual after TBI, but if there are physical symptoms they almost always get recognized. In many cases, survivors also learn that they are forgetful. But most survivors feel sure that their thinking, behavior, personality, and abilities to get things done are unchanged or changed very little, by the injury. Common head injury symptoms like unreliable judgment, undependable follow-through on assignments and tasks, inappropriate behavior toward others, reduced frustration tolerance and self-control, and increased emotionality are usually denied no matter how serious they might be. By failing to recognize that these are permanent problems, survivors learn nothing from the mistakes they make on this basis, repeating the same errors again and again.

A lot of people tend to believe that denial of illness is purely a psychological defense mechanism, and in order to get better, you just have to emotionally come to grips with the stark reality of your life. Certainly, the psycho-emotional aspects do play into the equation. But lacking awareness of deficits has pronounced neurological aspects, which make life interesting enough, even without the psychological aspects. Things like goal-setting and basic day-to-day logistics get that much more interesting, when your brain is telling you, “Don’t worry – you’re fine!” while it’s off doing its own thing.

And that’s kind of where I’ve been, on and off, for the past month or so. It’s where I have been for about as long as I can remember, in fact. But telling myself that I’ve messed up because I refuse to accept my limitations falls short of the whole truth. I’m more than happy to adapt to things I need to change in my life — but my broken brain keeps telling me it’s fine… just fine.

Well, I’ve had an incredibly long week, and I’m completely bushed. But for what it’s worth, there’s my thought for the day.

10 Myths of Brain Injuries

I just found this:

10 Myths of Brain Injuries

I’m not a huge fan of lawyers, but if they have it right, they have it right.

I think they have it right.

The Well-Adjusted TBI Survivor

I’ve been giving a lot of thought, lately, to the ideas of acceptance and adjustment to traumatic brain injury. Obviously, no one wants to be brain-injured. No one wants to have to deal with all the after-effects of head trauma, including the anger, rage, temper outbursts, emotional volatility, forgetfulness, impulsiveness, and difficulties with different senses like seeing and hearing.

But when you get hit in the head hard enough for it to tear the fragile connections that keep our systems running smoothly, well, you’ve got to make some allowances for that. You’ve got to come to terms with the fact that your brain is now different from how it was before. You may need more time to think things through. You may need extra help remembering things and keeping your temper under control. You may need to give up some activities, like high-risk activities that require high levels of coordination and stamina.

And if you are having problems with fatigue and seizures, well, you may want to consider another career other than driving a truck over long distances for a living.

Obviously, you have to be realistic in your choices — for example, I know I have balance issues, so I choose not to take unnecessary risks by climbing on wet, slippery rocks when I’m hiking out in the middle of nowhere. The last thing I need, is to slip and fall and be hurt… and then not have someone find me for three or four days — in which case, they might end up finding my carcass that’s been partially devoured by wild animals.

Obviously, you have to exercise judgment in what you do and do not do. And some TBI survivors are notorious for refusing to do just that. Something in our heads tells us I Can Do Anything! And a lot of us try it. And we end up re-injuring ourselves. Because we didn’t use good judgment.

Now, on the other side of the coin, there’s the tendency of an injured brain to tell its owner, I Can NOT Do Anything! Depending which side of the brain you were injured on –left-brain injuries can result in greater timidity, while right-brain injuries (like mine) can result in being blinded to risks — your brain can give you all sorts of different messages which may or may not be true.

The thing is — adjustment is possible. That is, adjustment that doesn’t completely trash our humanity and reduce us to afraid-of-your-own-shadow apologists for not trying. If we are aware of our issues, we can adjust to them in an intelligent and common-sense way. Not throw the baby out with the bathwater and say, ‘”I’ll never have a regular job again!” or tell ourselves we’ll just never have a full life, ever… But rather say, “Lookit, I know I’ve got balance issues now and then, and I know that I am hiking in a fairly remote region, so I’m going to find something else to do, other than try to scale that rocky cliff face in the rain. I know I need to get from this point to that point on the trail. What other options do I have?”

Looking for other options, instead of taking an all-or-nothing approach to life is not only good practice for a TBI survivor — it’s good practice for anyone.

Let’s face it — we all need to make adjustments, now and then. As we grow older, our bodies change and the info we have changes. We need to adjust accordingly. If we’re running into physical issues, we can either adapt to them by taking it easier, or we can push ourselves a little harder than we’ve gotten used to, and beef up our systems to be stronger. If we’ve just learned that our jobs are being phased out and there will be no more work of the kind we’re used to doing, in another three years, we can either start planning an early retirement, or we can take some training in another field.

Life is all about adjusting. It’s all about adapting. And dealing with a TBI is just another part of life for some of us. But it can be done.

The thing is to have the good sense to know what you must give up, and what’s just giving up before you’ve explored your many options.