Another day in someone else’s paradise

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The sun’s coming up in the distance. Gradually. The sky is getting pink, and small clouds are hovering over the horizon. Street lights glow orange, and the tail lights of cars blink on and off on the streets below. My room is on the “boring” side of the hotel on this trip, which is good. The “exciting” side is bright and loud and exhausting. This room is my refuge.

I had a great time with my relatives, last night. I have not seen one of them in 30 years, and I had never met their spouse. You can really tell we’re related. Our mannerisms and sense of humor are very similar, and we talk about the same kinds of things. It was also good to connect with real people who are not working at the convention. Real people. Who talk to you because they want to.

I managed to escape the drunken forays of my workmates last night. I went to dinner with my family, and they went their own way – dinner and drinking till all hours. I cannot do it. I cannot tolerate alcohol, and being sleep-deprived is a hazard for me. My whole system starts to degrade when I am overly tired, and I make bad decisions that get me in trouble. I say things I should not say. I get combative. I get off-balance and am in more risk of falling. I make stupid choices and make myself even more tired, which compounds my difficulties. I cannot afford to get in that kind of trouble – especially in a work situation. I have a spouse and a home to provide for, and I also need to keep myself safe.

That is something that people with no health challenges can understand. They can just run around and do whatever they like without repercussions. A playground like this is paradise for them, and they can let their hair down and run wild, staving off their fears of dying and getting old.

My life, unfortunately, is all about repercussions. But I cannot tell anyone, because if people find out that I have “issues”, they can be very unkind. And they can start avoiding me. That’s why I never tell anyone about my brain injuries. They just don’t get it, and this is difficult enough, without adding constant isolation to the mix.

Brain injury can be deeply isolating. People do not want to confront human limitations – especially when it comes to neuro stuff. They just don’t. So, I spare them the discomfort of disclosure, and we can all just live our lives. But that’s the double-bind. If I don’t tell people I need special consideration and assistance, I can never get it. But if I do tell them, I can lose my job. And don’t tell me it’s illegal to discriminate. Employers, bosses, whoever… will find other ways to exclude you, if you’re “not a good fit”.

I like having a job. I like having an income. I like not being homeless and living on the edge. And silence is the price-tag on that.

Muddling through. Battling back the demons. Dancing carefully on the razor’s edge. And never letting on, just what is happening with me.

All the lights and noise and busy-ness that energize others… they exhaust me. I’m on constant guard against the onslaught. All the excitement, the long hours, the rich food and drinking… they fry my system, and I can barely keep it together… then collapse at the end of it all. I get so depleted, that I am pretty worthless for weeks after. It’s the price I pay for keeping up with “normal” people, and it has been this way my entire brain-injured life.

So, I suck it up. Keep going. Just focus on this being over in a few days. Three days and counting. And I really only need to work part of that time. I just want it to be over. But in the meantime, I enjoy what I can. Focus on the positives. Take time to myself. Recharge as best I can. And sleep whenever possible.

Focus on the good, so I don’t overwhelm myself with negativity. Just stay the course and be grateful for what good I can find.

Why I try to write long — but not too long — blog posts

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Let's find out what's in there

I’ve been thinking a lot, lately, about how our technology isolates us and harms our mental health. I really think it’s important to do more than share a few words, here and there, or post a picture of something that’s cool or funny, We need more than that – and we need less of the constant barrage of tiny chunks of thought that don’t lead to anything else.

I try to write my blog posts in a length that completes a thought. Some days I do better than others. Today I am jet-lagged and tired (at least I got about 7 hours of sleep), and I am typing on a small keyboard for my tablet. So, I can’t do as much as I would like. But still, I do want to do more than just toss something out there.

I need to do better than that.

For all our fascination and devotion with technology, there is so much about it that can be deeply unfulfilling. It serves a purpose, sure, and we do can amazing things with it. We can connect with people who are isolated, or get ourselves interacting with others in ways we can’t if we are housebound or limited in time and energy. We can also learn new skills and enrich our lives by learning about things we could never otherwise be exposed to. It’s when we get caught up in the flurry of texts and instant messages and memes and tweets and the constant barrage of stimuli — and we never stop to let it just sink in — that we get into trouble. Many of us live in a state of perpetual “mental indigestion” where we never actually digest and assimilate the information we are taking in.

And that is where we get into trouble.

I wonder sometimes if our connectedness isn’t separating us, actually. That we’re sacrificing quality for quantity, but we’re just too anxious to stop and question the need for constant movement, constant motion. And I wonder if the devices that promise to bring us together aren’t actually driving us apart.

That’s why I try to write longer blog posts – so that some actual thought process takes place. I try to keep my posts fairly focused to practice honing my thought process and work on pulling out salient details from what I’m thinking. But I do try to post something that’s more than just a few lines. Every now and then, I’ll post “short and sweet”, but it’s important that the ideas flow into each other and I complete my thoughts.

That’s really the best way I know to connect… which is why I do this. And I hope others benefit, as well.

Good start, focused start

Memory test for today. Let's see if I remember the shapes by the time I'm done writing.
Memory test for today. Let’s see if I remember the shapes by the time I’m done writing.

I’m off to a pretty good start, this morning. I’ve been grappling with some serious clutter in my study, which is making it hard to focus and keep my attention on the Main Things I should be doing. I’ve been pinballing back and forth from different ideas and different projects for some time. I’ve also been bouncing around between different directions I want my life to take.

Not being happy in my job, not being connected with my work… that’s a complicating factor, and the anxiety that comes with it is compelling me to flit-flit-flit from one idea to the next. I just need some relief from the anxiety, and that means I spent a lot of time clicking around to different websites online, I get all swept up in Twitter, and I have — yet again — an even more brilliant idea than yesterday, about what I should be doing with my life.

cluttered office
My office isn’t quite this bad – but it’s been close…

It gets to be way too much, after a while. And my study has shown the effects of it. I’ve had piles upon piles of papers that I didn’t quite know what to do with at that instant. Also, bags of stuff I brought home when I changed jobs… and never put them away… books I’ve picked up and meant to read, but never got to.

It’s been quite the challenge, keeping things in order, but I’ve been working at it gradually, moving away the things I never use or look at, to make room for the things I DO use and look at.

I do it when I can, and I did some last night, just getting piles of papers off my desk and onto a nearby chair. This morning, I spent the first 30 minutes of my day sorting through the stuff on my chair, throwing away things, organizing others, and putting stacks of papers that aren’t immediately pressing, but need to be sorted, onto another pile that’s not in the middle of everything.

I have some serious prioritizing to do — and that includes my entire life, not just my to-do items for the day, week, or month. I need to make some choices about what direction I am going, and how much energy I’m going to spend in the process. I need to make some choices about what I’m NOT going to do, so I can free up energy for what I AM going to do. In some cases, it means leaving behind dreams and goals I always had, and was particularly fond of, as a kid. It’s hard. But I have to do it.

I’ve already started that process, making some decisions and taking some plans off my plate. There’s more to come… and it’s quite a challenging process. I hate having to let go of long-loved dreams. But I’ve got to do a reality check — and also realize that some of my dreams are blocking my reality.

So, that’s the excitement for this morning. I’ve got a full day ahead of me, planning for my business trip next week. I’ve got my list of things to handle, and I’m taking them one at a time.

So far, so good. And with the right mindset and a good pace today (as well as a nap this evening), things should sort themselves out just fine.

Onward.

Now, let’s see how I did with my memory test:

memory-test-4-30-16

Now, that’s interesting… I had it flipped the wrong way. Got the elements right, but the orientation is wrong. The single line is a little short, too. And the hatch marks. But the circles at least are the same size and pretty much similar in dimension, along with the connecting lines.

Memory test for today. Let's see if I remember the shapes by the time I'm done writing.This is what I did at the start. I wanted to challenge myself and see if I could build on the designs from prior days — if I could “trick” myself. And yes, in fact, I did. Ha ha.

NFL Concussion Lawsuits Get Really Real Now | Brandi on Steroids

051203-N-9769P-549To be honest, I haven’t been following the NFL litigation that closely. It all gets to be too much to keep track of. But this is a great summary of what’s going on, and how it may impact the NFL, as well as the rest of the country.

The Year of Football Lawsuits just took its next and possibly biggest step of all. A New York Court has sided with the NFL’s Insurance Companies and ordered the league to do what noone has managed to do before.

Show its hand.

Some background for those unaware. Not only has the National Football League fought admitting anything and only rushed to settle the Ex-Players Lawsuit when it appeared it would have to open its drawers, files, closets, secret compartments and anyplace else they have documents on what it knew and when it knew it about the risks of Concussions for Players, it never wanted to pay for anything.

The NFL wanted its Insurers to pay it for them and the Insurance Companies said Hell no. The NFL sued. The Insurance Companies sued right back. Those Lawsuits have been slow rolling as the Settlement of the Players Suit was moving along. Now the Judge in the Insurance Companies Suit against the NFL has said it’s time to find out what this has all been about.

In the end, it boils down to this, for me (as well as the article’s author):

Maybe there’s a principle at stake here. But probably not. It’s probably all about the Ex-Players Settlement Money.

UNLESS…and it’s the biggest unless in the history of Sports in the United States.

Unless those Insurance Companies are also looking at all of their other Customers who are being sued, will continue to be sued and will be sued alot more for alot more money over Football and Concussions/CTE. Customers like Cities, States, Universities, Pop Warner and a whole lot of others. Maybe even including Television Networks and Football Sponsors.

If those Insurance Companies are thinking about them, they might have only one thing in mind right now.

Finding out if and how badly the NFL, its Owners, Commissioners, Executives, Lawyers, Doctors, Public Relations Firms and anyone else around them screwed the Country.

I had to read that line a couple of times, to make sure it said what I thought it did —

… how badly the NFL, its Owners, Commissioners, Executives, Lawyers, Doctors, Public Relations Firms and anyone else around them screwed the Country.

Not just the players, not just their families (although that’s reason enough to go ballistic on the NFL), but the Country. If the NFL opens its books and shows its hand — and we actually let it sink in, what a fraud and a disgracefully dangerous, soul-sucking, life-killing scam the NFL has perpetrated on this country, all for the sake of “entertainment” — some very rich people are going to have some explaining to do.

Think about it — the marketing of the NFL, their propagation of playing practices and enthusiasm for football, their large-scale investment in cultural shifts towards idealizing the game they make billions from… as well as the whole infrastructure of pee-wee football –> high school –> college ball –> NFL (which has been described as an “underground railroad” for poor African-American kids to break the cycle of poverty)… we’ve all been marinating in football fever for as long as I’ve been alive. The started the Super Bowl around the time I was born, and I grew up — like so many others — really steeped in that head-banging excitement, which was never, ever questioned or challenged.

Football was never considered as dangerous as it truly is — and that’s for a very good reason. The folks who stand to gain ma$$ive amount$ of money have paid well to keep that information out of the public eye and discussion.

But now it’s coming around, and we’re going to have to take a look at just what the cultural thought-control by these ve$ted interests hath wrought. And yes, they are going to have some explaining to do.

Between the Panama Papers and these lawsuits, as well as the anti-elite dust storms kicked up in this election year, it seems to be a theme.

I just wish it didn’t cost us so much, to get a clue.

You can read the rest of the excellent article here: NFL Concussion Lawsuits Get Really Real Now | Brandi on Steroids

Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

injured_brain_2AI found another good post at another blog: Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

 

I was accused of faking my brain injury for attention
There is no way to soften the blow of a statement like this. I took what is arguably the toughest hit of my life, had to be rushed to the nearest trauma center with cuts, bruises, broken bones and a damaged brain – and was subsequently called a fake.

As I began my second life as a brain injury survivor, I found myself having to play defense against stunningly hurtful and relationship-ending accusations.

Brain injury is blatantly misunderstood by so many. The healing process for most injuries follows a predictable path.

When I was plowed down by a car back in 2010, my orthopedist let me know that I would be in a cast for three months and that most of my pain would be gone within six months.

Broken bones heal at a predictable rate. In fact, you could have set the Atomic Clock by his prediction. Six months after my accident, almost as if scripted, my physical pain ended.

But not so for my brain injury.

 

Read the rest here: Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

A New Glimpse Into Working Memory

When you hold in mind a sentence you have just read or a phone number you’re about to dial, you’re engaging a critical brain system known as working memory.

For the past several decades, neuroscientists have believed that as information is held in working memory, brain cells associated with that information fire continuously. However, a new study from MIT has upended that theory, instead finding that as information is held in working memory, neurons fire in sporadic, coordinated bursts. These cyclical bursts could help the brain to hold multiple items in working memory at the same time, according to the researchers.

“By having these different bursts coming at different moments in time, you can keep different items in memory separate from one another,”

Read the rest: A New Glimpse Into Working Memory

Shared from ABI Blogger — Mental Health: What We’re Dealing With (Part 2) – Life After A Brain Injury

brain-frame-swirlsAffecting All Aspects Of Life

Last week I spoke at great lengths regarding the manner of the changes that happen when a brain has been damaged after something like an ABI or TBI. My aim last week was to try and put those changes that are so hard to put into words into a (potentially) real life, everyday situation that people could relate to. I wanted people to see and understand the confusion that occurs after ABI, the lack of familiarity, the feeling of being out of your comfort zone, and most importantly that these changes are not a gradual decline; these changes are foisted upon you in a life changing instant.

Read the whole post here: Mental Health: What We’re Dealing With (Part 2) – Life After A Brain Injury

What I really seek is character. Not just reward.

character-may-be-manifested-in-the-great-moments-but-it-is-made-in-the-small-ones-quote-1Character is what you do, when no one is looking.

It’s why you do things, irrespective of reward.

I don’t want my life driven by asking “What will I get out of it?” but by answering “How will I contribute to others through this?”

Character is what gets you out of bed in the morning at a decent hour, so you get the exercise that you really don’t want to do, but must.

It’s what keeps you on schedule to you eat the breakfast and take the vitamins that your body needs to be healthy and productive throughout the day.

Character is what makes it possible for you to do all the things in the course of the day that need to be done, even though you don’t really want to do them

It’s what teaches you your place in the world, in society, in the grand scheme of things… and reminds you that your own personal comfort and convenience must sometimes often take a back seat to the Greater Good.

Rewards are great. They’re the fodder of some great marketing campaigns, and they do motivate people.

But Character… now, that’s something that lasts, even when there are no obvious rewards in sight.

Listen first… then talk

Here's the drawing practice for the day
Here’s the drawing practice for the day

So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.

Why, pray tell, would that be so? you may ask?

Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.

This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.

For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.

And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.

Oh. My. God.

Someone please help me.

I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.

Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.

It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.

Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.

Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.

If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.

Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.

But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.

Okay – pause – let’s see how my memory for that starting image is doing:

memory-test-4-29-16

Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.

I’ll try again later.

Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.

Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.

I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.

Onward.

Chyna’s brain to be examined by ‘Concussion’ doctor after accidental overdose, manager says – LA Times

What a drug promises is not always what it delivers
What a drug promises is not always what it delivers

This is both sad and cautionary.

Chyna’s manager said he knows how the wrestling star died last week.

Chyna, whose real name was Joan Marie Laurer, died of a combination of the sleeping pill Ambien and a form of the tranquilizer Valium, her manager, Anthony Anzaldo, said Wednesday.

Chyna had been taking the legally prescribed pills over the course of three weeks, but wasn’t using them properly, he said. Her death was the result of an accidental overdose, Anzaldo insisted, not suicide.

Source: Chyna’s brain to be examined by ‘Concussion’ doctor after accidental overdose, manager says – LA Times

I am really looking forward to finding out what Dr. Omalu discovers, and if it has anything to do with Chyna’s brain function. My new neuro prescribed Ambien to me, six weeks ago, but at the recommendation of my former neuropsych (it was one of the last things they told me, before they departed), I have not taken it. Frankly, I’d rather acquire the skill of getting enough rest, than take my chances with Ambien.

The neuro was not pleased and kind of rolled their eyes in disbelief that they said so. however, I trust my old neuropsych more than this new neuro — they’ve been “in the business” for a heck of a lot longer, and they know their neuropharmacology a heck of a lot better than the neuro (who didn’t even read their neuropharmacology recommendations, at first).

Looking around, I found this at Sports Concussion and the Clinical Neurologist, Part III, which looks like a good read. It didn’t take long for me to find a mention of Ambien (underline emphasis is mine):

Sleep is best treated with natural, over the counter remedies to prevent dependency and rebound insomnia. Compounds such as diphenhydramine (25 to 50mg), valerian root and melatonin (3-12mg) can be used alone or in combination. Diphen-hydramine is also effective in aborting migraine and other headaches and can also be used as a short-term headache preventative. Melatonin acts to maintain sleep. If medication is required, then TCAs would be considered first line due to their ability to treat associated symptoms. Trazodone, which is chemically similar to TCAs, is another alternative. Sedative hypnotics such as zolpidem (Ambien) and eszopiclone (Lunesta), which can cause rebound insomnia and worsen post concussion symptoms of headache, cognitive symptoms, or dizziness, should be avoided as should benzodiazepines and barbiturates.

So, yeah, WTF, neuro? The last thing I need is rebound insomnia, and worsened post-concussive symptoms. I’m trying to get rid of the headache, cognitive symptoms, and dizziness — specifically — so, why would you prescribe them for me?

And what about all the other folks out there like me, who have been prescribed these things and are possibly having side-effects?

It truly is maddening.

Once upon a time, Chyna was taking Ambien and a type of Valium, and the two interacted all wrong. Maybe there were other factors at work, but the simple fact is, if she did have a history of head trauma, then she was taking at least one drug that she should have stayed away from. And her doctor should have known that. If insomnia — and rebound insomnia — worsen cognitive symptoms, and IF she was having trouble sleeping (which is a safe bet), it would have been harder for her to make good decisions about what to do. And that’s never helpful. Especially if you’ve got a history of brain injury that already makes things difficult and puts more “stuff” on your plate.

I’m sure Chyna never intended to wind up dead, but that’s what happened. And sadly, given the circumstances, I wish I could say I’m more surprised.

R.I.P. Chyna. You were a warrior, for sure.