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.
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,”
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.
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.
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:
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.
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.
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).
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.
Don’t get me wrong. I have the utmost respect for my new neuropsych. They have great intentions, they are smart — brilliant, really — and they are driven and determined to help people who are in need of assistance. I’m lucky to have been connected with them.
Here’s the thing, though — they’ve got 30 years less experience than my former neuropsych. And that really shows. It shows in their pacing, their approach, their focus. It’s my understanding they’ve been working in clinical settings that have been largely academic, for most of their career, so far, and they’re relatively new to individual clinical practice.
My former neuropsych had 40+ years experience in clinical and rehab settings. I believe they once ran a rehab center, in fact. Or two or three. Anyway, they had decades of high-level experience in rehabbing brain injury survivors, and I benefited from that for the past 8 years or so.
Now I’m working with a “spring chicken” — it’s not the most professionally respectful term, I know, but that’s how they seem to me. They’re 15 years my junior, which just amazes me… And it shows.
Good God, do they have a lot of energy. It’s that kinetic, over-the-top-can-do kind of enthusiasm that people have before they hit a lot of walls, personally and professionally. They have an exuberance and optimism that I used to have, too.
Then I got hurt. And life happened. And a lot of crap came down the pike for me. And now I am where I am now — with a pretty big deficit where all my own exuberance and optimism used to be.
Although… maybe that’s not entirely true. Maybe I still do have that energy — just not to the same willy-nilly degree that I used to. Or maybe I do, and I just need to bring it back. Access it again. Play off the energy of this new neuropsych, who is in some ways like a breath of fresh air, compared to the dour pessimism and personal cynicism that sometimes “leaked through” with my old neuropsych.
Oh, another thing just occurred to me — I’m working around a lot of people who are my age or older. And that’s affecting my perspective, too. I work in an older environment, very established and staid, and compared to my peers, I feel like a spring chicken, myself.
So, I’m balancing out the energy of youth, as well as the balance of age. My new neuropsych is clearly still learning about things like how to pace their speaking, and how to give me space to sort things out. They move too fast for me, at times, and it’s frustrating.
But it’s good to get pushed. Again. After years of being accommodated. I need to be pushed. Quit feeling sorry for myself. Really work on my reaction time. And get back to my memory exercises. See above.
Here, let’s try to draw what I had at the start:
Not bad – I just had the proportions off a little bit, but all the elements are there. The right circle with the “x” is higher than it should be, and the vertical line off it is longer than the original. Also, the hatches on the left line are longer than they should be.
I’ll have to try again later today, and see how it goes.
Gotta get back to doing my exercises. Get myself going. And continue to make progress. Keep moving forward. Keep at it – give myself time to rest – but keep at it.
Once you have your blog setup, you need to get your overall design together. There are a lot of different choices, but I focus on the following three elements:
I’m sure there are plenty of people who would argue with me on this, but for me, simplicity is best. I’ve tried different settings and configurations over the years, and to be honest, keeping it super-simple has really turned out best for me. But it’s up to you. Whatever you like and works for you, is just as good.
And always remember — you can go back and change things later, if you like. Just experiment with it, and see how it works. You’ll learn a lot, so keep an open mind and have an adventure😉
Sidebars are the columns to the right or left of your main blog content area. Many blogs have two of them, but a lot have only one, on the left or the right. I prefer a sidebar on the right, because it looks better to me — more like a blog, and less like a regular website. There’s nothing wrong with having a design like a regular website, but the convention for blogs seems to be putting your extra stuff on the right.
Some themes will let you pick and choose how many sidebars you have and which side they’re on. The theme I use just puts it on the right, so that keeps it simple.
Widgets are the extra stuff. You find them under the menu with the little paint brush:
You’ll see the options you have for widgets, as well as where you can put them.
Widgets include “follow” buttons, email signup fields, lists of archives and recent posts, social sharing, as well as promotional and nice-to-know additions on the right. I’ve seen authors put pictures of their books on the right, and then link to their “buy page” so you can get a copy of their book. I have put extra stuff like quotes and facts and figures in my sidebars. These are all done through widgets in WordPress.
Depending on your theme, you can have a ton of different options. Here’s what I have to choose from:
Obviously, I’m not going to use ALL of them. I need to pick and choose carefully. So, after years of experimenting, and realizing that some things were more trouble than they were worth, I ended up using these:
Sharing is a really important piece of your setup, because you want to reach as many people as possible, and giving others the ability to share your posts with others. You can put a Social Media Icons widget in your sidebar, at the bottom of your posts, and you can also configure your blog to share automatically for you.
You find your sharing settings under the Settings Menu:
You’ll see this page (if you’re hosted on WordPress):
First, you want to set up your Publicize settings. Click the Publicize button:
And you’ll go to this screen:
You can see that I have only connected to Twitter. I blog anonymously, so I don’t want my posts connected to any of my “real life” personal or professional social networks. So, all I have connected to is Twitter. You may wish to connect to everything. That’s your choice.
Whenever you post to your blog, with Publicize, you’ll post to all your connected social media without needing to do anything. For someone with memory and sequencing issues, this is a godsend — you don’t need to make a checklist of where all to post after you blog something. Publicize does it for you.
That’s why it’s so important to set it up.
Next, you want to set up your Sharing Buttons (which will appear on your pages), so people can share your posts with others. You just drag all the Available Services down to the Enabled Services area. You can see that I only have Twitter, Facebook, and Email enabled, because my posts are very text-heavy and also very personal. I could put the Print button in there, but people usually know how to print pages, so I won’t take up the space on the page.
You also want to turn on the buttons for your whole blog — check all the boxes beside “Show buttons on”, and you can also put your Twitter username in there, so whenever your readers tweet your posts, your own username will show up.
Like and Reblog are also turned on for me — especiallyReblog because that makes it really easy for people to share your posts on their blogs.
So, that’s the lesson for today — three basic things to do that aren’t terribly complicated but will make your blog easier to use and share with others.
The thing that strikes me is that I’m not surprised. I have been suicidal a number of times in the course of my life — although I never acted on it. And I know very well the feeling that it’s pointless to go on, because there’s nothing I could ever do to change my circumstances, and nobody really cares, anyway. Personally, I think that if I’d grown up with a mobile device, I probably would have put an end to my suffering many years ago, because even if your device does make you feel connected, it’s doing the exact opposite.
“The one thing we know for sure is that interpersonal isolation is a part of suicidality,” says the author of the blog, and that sounds about right to me. Feeling cut off from your world, unconnected, alienated, adrift, with no direction, no anchor, nothing to give you a sense of where you are in the world… what’s the point of going on? What indeed?
And with traumatic brain injury, that can be a real problem. Because we can lose our sense of our Selves. We can lose all connection with ourselves and who we are. To me, loss of a Sense-Of-Self is a major contributor to suicide risk. Because you’re not just losing your sense of connection to others. You’re losing your sense of connection to yourself. If you can’t feel yourself, how can you feel connected to anyone else?
It’s a problem.
But I didn’t actually start thinking about this post, in terms of suicide. Rather, I was thinking about my work situation, and how isolated I felt myself become in the years after my TBI in 2004. I’ve been thinking a lot about why — after 25+ years in high tech — I feel like an outsider and an amateur at times. It makes no sense. I have a ton of deep experience, and I have the kind of expertise and insights that you can only get from doing what I do for two and a half decades — and longer.
So, why do I have such a skewed vision of myself and my place in my chosen industry?
I believe it’s because of my lack of connection with the larger community. Fatigue is a major challenge for me, as is extreme sensitivity in groups and crowds where a lot of people are talking, and conversations shift and change with the winds. There are a number of tech meetups in a nearby city, but I haven’t got the energy or the inclination to go out and meet people. There was a professional conference just a few weeks ago that I had signed up for, but I was too tired to go.
So, I missed a chance to connect with others and widen my professional circle.
And that’s a real problem. To stay current and “relevant” — as well as find out about decent jobs — I need to get out there, mix and mingle, and get seen. Talk to people. Connect with my community, my tribe. I’ve been far too isolated for the past 10+ years, and I need to do something about that.
Of course, I’ve been getting myself back on the good foot, and I’ve needed to heal. But now seems like an excellent time to start branching out again, to see what more I can make of my life and my career. That includes branching out in my current job, even though it may not actually be around for much longer. I just need to do more connecting with others. Because like life in general, the more connected you are, the better your chances of survival.