Serious, not serious

serious-not-seriousI’m feeling better today – much better. Thank heavens for that. This bug I’m fighting off is likely just a sinus infection, but the aches and pains and sore throat had me down. I woke up in the night feeling really sick, choking on my coughs, the back of my throat burning. I wanted to get up and gargle with warm salt water, but I couldn’t rally. So, I rolled over and went back to sleep. My body’s been in a lot of pain, over the past weeks, what with all the driving and the disruption of my schedule over Thanksgiving – AND the break in my daily exercise during November, when I was so busy, each morning.

I’m paying for all of that. I thought I was doing fine and I didn’t need to keep up with my “maintenance”… but I was wrong. So very wrong.

I’ve been having a bit of trouble, lately, with my memory and reading. I’ve been mis-reading emails at work, which isn’t good. I put people through all kinds of extra work, because I don’t understand what I’m reading, or I miss some details. I need to just get in the habit of reading an email three or four times before I respond to it. Maybe I should read them out loud to myself.

I also got a text from a former co-worker last week, and I completely forgot who they were. They were at a conference I was supposed to attend, but couldn’t because of my dentist appointment (it went well, by the way – but my spouse wasn’t feeling up to eating out, so we just came home and I cooked us some fresh steaks, which was just as good as eating out — maybe better). Anyway, I got this text from someone saying “Are you here? We are –” and then they listed the names of the other people I used to work with. But because they didn’t put commas between the names, I thought it was all one name, and it didn’t look familiar to me. And didn’t I look like an idiot, texting back “Um, I think you have the wrong number. I have no idea who you are.”

So much for that.

I dunno, I kind of feel like I’ve been going backwards over the past weeks and months. My memory isn’t as great as I’d like it to be, and I keep missing small details in conversations. I also have lost ground on the stuff I’m managing at work, and I’ve gotten lost in the weeds of all the details. Big picture thinking is not my strong suit, these days.

Of course, it doesn’t help when you’re being threatened with layoffs, and you don’t know where you’re going to be in a few months’ time. I totally dodged a bullet on the most recent round of layoffs, but supposedly there will be more. And it’s tough to not let it bother me. I’m the sole breadwinner for my household. I have a mortgage and bills to pay, food to buy, and my spouse’s business to keep stable. My spouse does a good job at what they do, the market just isn’t always there for their products & services, and there have been issues with customers not paying, so that’s a problem.

I like not being homeless. Been there, done that, not going back ever again. When I was a little kid, I once struck up a conversation with a little old lady who was buying dog food (I used to be a really outgoing kid, before the TBIs started happening). I asked her what kind of dog she had, and she said she didn’t have one… and then she ran away from me. I asked my mom why, and she said the lady was probably going to eat that dog food, herself, because she didn’t have money, and dog food has a lot of good protein. I’ll never forget the look of shame and distress on that little old lady’s face. And I swear to God, I will do whatever it takes to prevent myself and my spouse from ever having to experience that.

It made an impression, to be sure.

So, that’s my focus in life – just keeping us housed and fed and healthy. Of course, there’s only so much you can do for someone who won’t help themself. And that’s where my spouse is — just neglecting themself and letting their health go to hell. Watching the love of your life fade away because they would rather die than provide themself with a sense of being loved and cared for, is not easy. But that’s exactly what’s happening. If someone isn’t waiting on them, they don’t feel loved. So, in order to feel that, they play helpless and victim, and they wait for others to wait on them… which is about the worst thing you can do for yourself and your health.

I blame their friends. They are all of that ilk. And it’s killing them all. Not good.

So, that’s adding stress to my life. Just a bit.

It’s hard to know what things I should stress about, and which ones I should just take in stride. I don’t want to keep having these memory and cognition issues, but I also don’t want to make too much of it. I need to be objective and understand exactly where I come down, compared to where I want to come down, and then take steps. The thing is, I don’t get a lot of help from others, figuring this out. It would be nice to have an objective outside opinion, but my neuropsych is very much into the idea that we make the lives we want to have, and mild TBI is not the sort of thing that should hold me back. Especially the kind of TBI(s) that I have had over the years.

They seem to believe that because my test scores are pretty good, overall, and I have just a few areas of difficulty, I should be fine. And the thing that makes it worse for me, is my interpretation of my experience as something that’s negative, rather than positive.

I get that it’s important to be positive about things. Absolutely. The thing is, when I am having issues, I need to be able to be clear about them. I need help getting clear about them. And their influence doesn’t help me, because I get very stressed and very turned around when I try to explain to them, and I can tell they’re not taking me seriously.

It’s been infuriating at times, and many’s the time when I nearly didn’t go back at all. I have a hell of a time verbalizing my issues out loud. And when I come up against the “disbelief field” of their attitude, everything gets all jumbled up. So, I’ve often wondered how much sense it made for me to even go see them. But they’re literally the only person I know who has a grip on brain injury, as well as what’s possible in life, so I’ve used that experience as a way to be more clear in myself about what was really going on with me.

And of course, I have this blog. And my notes. So, I can write my way through all this and make sense of it in writing, even if I can’t do it out loud.

It’s hard to know what’s serious, and what’s not. And the thing that makes it all even more stressful, is having pressure on me to be a top performer, when I am lagging cognitively. So, I just do what I see others doing – I just keep going. I pretend that everything is fine, and I’m getting it together, and I don’t worry about how I look to others, or if it’s compromising my position.

Just keep going. Focus on the basics. Stick with fundamentals and keep everything very, very simple. Ultimately, things will work out, if I just don’t give up — and I keep learning my lessons properly.

Onward.

Advertisements

Understanding the trauma in traumatic brain injury

I’ve been reading Robert Scaer, M.D.’s book The Body Bears the Burden, thinking a good deal about the role of trauma in traumatic brain injury.

Trauma in TBI, I believe (from personal experience and observation of others’ lives) happens both during the injury and afterwards.

It’s not just the injury itself that brings on the terrible sense of threat to your very existence — it’s the life afterwards that emerges, when you are forced to face up to changes in your life and your personality and your capabilities that require a whole new way of working.

The repeated shocks and hurts and surprises and disappointments and the overwhelming sense that you’re not who you are anymore — and your whole existence is in question — threatens us on such a deep level, that the trauma of the initial injury can sometimes be dwarfed by the after-effects of the changes.

Suddenly, you’re angry all the time — for no apparent reason.

Suddenly, you can’t read things and understand — and you don’t find out till after your job (which depends on your reading comprehension) is in danger.

Suddenly, your balance is off, you can’t tolerate light and sound, and you’re breaking down in tears over nothing.

Who IS this person? Where did you go? And who has taken your place?

This change and the questions that arise can be abrupt and alarming — and the worst part is, it’s an internal storm that rages, almost (but not quite) in plain view, vague enough to elude explanation, but pervasive enough to disrupt much about your life — and throw you into a tailspin about the rest of your life which hasn’t been impacted, but might be.

If this doesn’t constitute a threat to your existence — one of the chief requirements for the classification of trauma — I don’t know what is.

So, as we approach traumatic brain injury, let’s not just focus on the brain. Let’s focus on the trauma, as well. Let’s help the countless folks out there — including our returning wounded warriors bearing the signature wounds of the Iraq and Afghanistan wars — who are struggling with both TBI and PTSD, and watching their symptoms get worse for no apparent reason.

Let’s stop dividing up the treatments into “disciplinary territories” and discounting the importance of body and mind and heart and spirit and how they interconnect to create the whole of us.

Traumatic brain injury has been getting a lot of press, lately, with regard to the brain. But unless we seek to understand trauma as diligently, I fear we are a far cry from a comprehensive solution for this widespread issue.

Fourteen Years Later, Someone Finally Got It…

 

Pat LaFontaine shares about his experience at BrainLine

 

I’ve been watching the video on BrainLine – NHL Hockey Hall of Famer Pat LaFontaine Shares His Story

Hear hockey great Pat LaFontaine recount his story and the steps he took during his recovery after several brain injuries.

It’s a great retelling of a story about how he sustained multiple concussions and could never get answers from anyone… until he was so impacted, it was obvious to everyone that something wasn’t right. It’s also a very telling look into an often hidden world of athletes who know something is wrong, but are told time and time again by doctors and trainers and other expert folks, that they just have a psychological issue and if they just suck it up, they can get back in there and get back to regular play.

Around 19:10 in the video, LaFontaine talks about how he had to keep calling his doctor (the new one who actually had a clue what was going on) to reassure him that the source of his emotions and depression and headaches and not feeling right was physiological. He thought that the doctor was just being nice, because he felt like he was losing his mind.

How true it is.

When you’re going through the disruption of a TBI, you can genuinely feel like you’re going crazy. Things are strange, you don’t feel like yourself, your emotions may be off the charts or completely changed, and nothing seems to be clicking. And trying to get help can be next to impossible, if the doctors you see are not familiar with brain injury/concussion.

This is so important — I wish more doctors and trainers and coaches of student athletes would pay attention to this and keep up to date with the most current research and best practices, so they can not only help people  understand what’s happened to them, but they can also take steps to prevent repeat injuries before healing is complete. Concussions among student athletes is much higher than most guess (and former studies showed), and second subsequent injuries before the brain has healed can be devastating. Second impact can complicate concussion symptoms, and if doctors and coaches and trainers are all pressuring the players to get back in the game and/or telling them that they’re really fine, they can get hurt again — and have even worse problems to deal with after the fact.

I was one of those student athletes who went back in the game after the concussions I sustained, but I’m different from many, in that my coaches and trainers had an eye out for me and kept me out of play (against my will). I was very luck. Lots of student athletes don’t have that same level of vigilance and care.

The one problem was that I’m also one of those folks who never got proper medical care until about three years ago. This was long after the period in which I could file for any sort of assistance or get accurate medical records documenting my injuries — so the chance of me getting any help from any organized sources is slim to none.

I’m on my own.  And even though I have doctors who know about my TBI history, I’m still on my own when it comes to advocating for my own care and well-being. They mean well, I’m sure, but when they tell me that I don’t need to worry about how much sleep I’m getting, because I may not need at least 8 hours a night, it’s not particularly helpful. And when they look you over, plying you with questions about your mood in search of clues about psychologically based depression, completely ignoring the physiological aspects of mood and emotion, well, that’s even more depressing.

I can tell you from personal experience that dealing with post-concussion syndrome is a real bitch, when you have no idea what it is, you think you’re losing your mind, everyone around you is telling you to just “shake it off” — or they have no idea you have anything to shake off, and all they can do is give you a hard time about struggling the way you do. And then you go to the doctor, and they tell you to take a meditation class or relax more or go on vacation to get your mood back in order… this is not helpful, in the case of TBI.

According to the medical/mental health system, without proper medical documentation of my injuries, in the eyes of others, I’m probably mentally ill. All that emotional volatility, the perseveration, the rumination, the difficulties getting started and stopping what I’m doing, the extreme swings in energy levels… Even some of my friends who are psychotherapists have written me off as mentally ill and refusing treatment. These are the same people who have flatly discounted the effect of TBI in my life and claim that all I need is to deal with my difficult childhood to get on with my life.

They’re wrong on so many different levels. Especially about me  refusing treatment — I’m not. I’m actually getting treatment at the level I need — on the neurological level, not on their preferred level. I know that I’m not mentally ill, and so does my neuropsych. And so does every other person who is intimately familiar with TBI and understands the nature of the issues I face on a daily basis. To say it’s maddening to watch the mental health field have a heyday with folks who have been neurologically impacted, would be an understatement. And hearing stories of doctors playing psychotherapist is equally irritating. But at the same time, I can’t let the shortcomings of our “modern” mental health industry impact my own peace of mind and my own mental health.

There’s no sense in that.

So, I seek out answers for myself.  And I share what I find, in hopes that others like me may realize that someone out there actually gets it. They’re are not alone, and there is hope.

Where there is good information and good communication, there is a chance for change.

Lost weekend

Note to self – before reacting (or over-reacting) to information, make sure you have all the facts. And if possible, check with a reliable source, before you start jumping to conclusions.

I almost walked away from a very important relationship over the weekend, because I had bad information, and I didn’t think it all through well enough.

I panicked. And I jumped the gun. And I overreacted to the point where I was planning on restructuring my entire life.

For no good reason. I was wrong about some key points, and I regret having lost what could have been an amazingly creative and productive weekend.

Note to self – get out of your head. Value your hours — and your relationships — enough to get all the facts before trashing your life.

A learning life is the best rehab for me

Tomorrow is Thanksgiving, and today I’m traveling to my extended family, several states away. I expect the traffic to be heavy, and I expect the trip to be long. I’ve spent the past week preparing myself for this mentally, emotionally, physically, and spiritually. I’ve consulted with my neuropsych, I’ve checked in with friends, I’ve been eating right and I’ve been working out and stretching regularly. Last night I actually got eight hours of sleep.

This year is very different from past years, in that I’m not pushing myself up to the very last minute when my spouse and I hit the road. I’ve been taking it easy, taking the different tasks in manageable pieces, not biting off more than I can chew, but keeping on task and on point. And I’ve been using my timer, to make sure I stay on schedule.

This year is also different, in that I called my parents ahead of time to find out what the plan was going to be for the next few days. I checked the weather, too, so I could be prepared to offer suggestions. I’ve requested that we just take Friday “off” and relax and do some light activity outside — the weather is going to be beautiful, and I would really like to spend time with my folks, just hanging out and talking.

I am also planning to share with them the findings of my neuropsych evaluations and work. I’ve made tremendous progress, over the past year, and I want to share the info with my parents in a positive and constructive way. I haven’t been able to do that, till lately, as I’ve had a lot of reservations about my progress (not helped by my psychotherapist, who has been trying to talk me into “accepting” (i.e., giving up on) my limitations and settling for less of an amazing life than I believe I can have.

I’m not sure how they got to be that cynical, but I’m not on the same page with them, and I am certainly not going to settle for less, just ’cause I’ve had some misfortunes along the way.

Anyway, I’ve been giving a lot of thought to how much progress I’ve made over the past year or so. My neuropsych says they are encouraged and inspired by my progress, which is great. I’m really happy I can return the favor of their assistance. I really have come a long way. A year ago, I was pretty turned around, I didn’t have much direction, and I was very muddled and confused by the ramifications of my issues. I had a long way to go, to figure things out.

My previous therapist wasn’t helping matters, by constantly focusing on what my mother did, as a source of my woes. I invested a lot of time with them, essentially being led down the wrong path — it wasn’t necessarily my mother (or my father) that was the root of my issues. It was more the neurological context in which I was living in my childhood — all those unidentified, misunderstood, pesky issues that complicated and intensified every experience I had, and had me “pegging” emotionally and behaviorally all over the map.

Now, I have to say, my current psychotherapist has helped me regain my balance from before. I think my previous therapist was trying to regress me, to find some deep, dark secret hidden in the innermost recesses of my psyche, so they could exorcise my demons or something like that. And my current therapist helped me regain my balance by helping me focus on the logistics of my day-to-day life, rather than floating around in the distant past. And I am very grateful for their help (tho’ I have to move on now).

Indeed, I think the thing that has helped me the most, over the past couple of years, has been the help I’ve gotten in dealing with my everyday life — keeping my issues in mind, understanding them and how they impact me, and getting to the bottom of the problems I can expect to have, given different situations. Being aware of patterns, like:

I get tired after a full day of intense activity, and when I get tired, I have a tendency to get turned around and agitated, which adds to my internal confusion and throws gasoline on the fire of my temper… and really contributes to me melting down over every little thing

helps me immensely, and it also helps the people around me to help manage and anticipate my issues before they get completely out of control.

And one of the big things that helps me identify my patterns is examining my life on a regular basis. I take a lot of notes, and I record a lot of my experiences. I look back on my days and weeks, and I watch for issues and patterns that emerge over time. I write down the times when I am having a really hard time of things, and I identify the contributing factors. And I draw pictures of my problems and the “flow” I use to deal with them. I work with my life — the failures and the successes — as my own individual recovery plan and practice. And I see results.

Real results. Like promotions at work. Like improved relationships with others. Like a more creative approach to my life, overall. If I can get past the old bad habit of being so hard on myself, and I can treat my difficulties as challenges (from the outside — from my faulty wiring — rather than from my inside character or personal worth) to be tackled creatively … challenges just waiting to be overcome… well, then, the ultimate results of my examined life are tangible improvements, the likes of which I never thought I’d see happen.

Truly, this is remarkable. I always thought — before I knew why things were always getting so screwed up with me — that I was flat-out doomed to failure. I had precious little expectation that things would ever turn around for me permanently… I figured it was always just a matter of time, till things got mucked up for no reason I could identify, and everything I’d worked so hard for just went away, swallowed up in the sinkhole of my life.

But now that I’m paying attention to the basics, and I’m following up to deliberately study the results of my actions and see how they can be improved… Now that I’m treating my life like the miracle that it is, and I’m studying my daily “playbook” with focus and intention, and I’m refining my approaches, based on what I know about my limitations, I no longer believe that I am stuck in endless cycles of attempt-failure-attempt-failure-attempt-failure.

My life is different now. Because I’m living it differently now.

And it’s good.

In case you’re wondering how I go about doing this, here’s the basic flow of my practical-life-recovery-plan:

  1. I figure out what I want to do. I understand why I want to do it, and how it fits in the overall picture of my life. For example, I figure out that I need to exercise first thing in the morning, and I need to really work up a sweat, because I have been feeling a little sluggish lately and I need to “pump up” my system a little more.
  2. I do it. And I track what I do. For example, I do my morning workout, but I don’t manage to work up much of a sweat.
  3. I figure out if I accomplished what I set out to do, and if I succeeded, I celebrate in some way. If not, I ask myself why that is. For example, I make note that I worked out — and I congratulate myself for doing that — but I didn’t work up a sweat, and I wonder why.
  4. I figure out why I didn’t accomplish exactly what I set out to do, and I ask myself what I can do differently to change that the next time. For example, while I’m having my breakfast, I look at how I’m doing, and I realize that I’m tired and distracted. I figure out that I didn’t get to bed at a decent hour the night before, and I also see that I let to many errands wait till later in the day, which pushed my schedule back farther into the evening, so I couldn’t relax and get to sleep at a decent hour.
  5. I think of alternative strategies I can follow to make changes in my daily life, that will help me accomplish what I set out to do better today. For example, I spend a little more time planning my day in a way that will let me get my busy-work done first thing, and give me more time in the afternoon to take it easy and wind down.
  6. I go about my day and check in with myself periodically, to see how I’m doing. I make a point of remembering the goals I did not accomplish, which I really, really wanted to accomplish, and I work a little harder to keep myself in line. For example, I check my daily work list periodically to make sure I’m staying on schedule and make sure I’m not overloading myself with extra stuff in the evening.
  7. Last but not least, I follow up. I do a check-in later to see how I’m doing, and if I’ve accomplished the goals I set for myself, I celebrate and reward myself. For example, if I get to the end of the day without wiping myself out, I treat myself to a little bit of television, watching a show on cable that I really like. Or better yet, I make an early night of it and I get in bed at a decent hour, which lets me sleep and sleep and sleep till I’m actually rested.
  8. And then I do it all again the next day.

To some, it might sound arduous and like a lot of work, and it is. But it’s good work, and it’s really more of an orientation to my life, a kind of spiritual practice, if you will. In the Give Back Orlando material, they talk about how TBI survivors need to be more mindful of their lives, and I have found that to be very true. But even more importantly, I’ve found that I want to be more mindful of my life. Yes, it’s work, but I don’t mind the work. Yes, it’s different from how most people live. But I’ve never been like other people, so why start now — and why feel badly that I can’t be like them? I’m just fine, the way I am.

In the end, yes, it does take more work to live this way. In the end, yes, it is more time-consuming to do things that a lot of people do quickly and easily without a second thought. In the end, no, I don’t have as much time to fritter away on non-essential activities.

But in the end, the payoff is huge. I get to have a life.

Better yet, I get to have the life that I want to live.

no one believes me after mtbi

Yesterday someone found their way to this blog by typing in this sentence. And the other day, I fielded a comment from another TBI blogger who has been having problems getting support from her family.

I think one of the most challenging friggin’ impossible aspects of TBI, especially MTBI, is the amount of skepticism that the rest of the “neurotypical” world has towards the brain injured. Because they can’t see our injuries, they have no idea they exist. And they often flatly refuse to admit that they may exist.

Our struggles are seen as “laziness” or some other character defect. And if we really wanted to do some things, well, we should be able to, right? After all, we have free will, and where there’s a will there’s a way. Right?

Not always.

As one of my readers, M, recently commented quite eloquently, our brains are changed by the experience of injury, and it is vital for us to factor in that change, when setting post-TBI expectations. The will and indeed the whole personality is intimately tied with the brain, and when the brain changes, well, the personality and character of the survivor will, too.

It’s important to approach our changed brains with the right information, compassion, and non-judgment. If we don’t, it just makes matters worse. And no one is served.

One of the changes that can take place — which has been an ongoing challenge for me — is that the amount of information the brain takes in can be diminished. That can lead to all sorts of processing issues, with important bits of info getting dropped – or, at times in my case, never getting in at all. And when the brain has less information, but doesn’t realize it, then it can start to miscalculate without realizing it. This can lead to a condition called “confabulation”, where a person comes up with ideas and concepts that are only partly accurate, but they have no idea they don’t have the whole story. They may think they’ve got it all figured out, but they don’t. Yet they don’t even realize it, which is a problem, when it comes to dealing with other people, some of whom may know better.

I know that my own life has been marked by many, many instances of people thinking I was lying or intentionally misleading them about things I was saying, when I was simply confabulating. I was absolutely, positively, 100% certain that I had all the details right, I had the best of intentions, I was trying really hard to connect with them, and I thought for sure I was being intelligent and sensible and together… when all along, there were key pieces of information missing in what I was talking about.

I wish I could give a specific example, but I can’t think of one right now… no, wait — here’s one:

I was hanging out with my dad on a recent family trip, and I started talking about some new idea that I thought he’d really relate to. My dad’s a really heady guy and he loves to talk conceptually about stuff. Some kids talk to their dads about golf or baseball. I talk to my dad about ideas. So, wanting to really connect with him during my visit. I had this inspiration to tell him about a new concept that I’d been thinking about, over the past few months. My dad and I have had a somewhat rocky relationship — I never turned out to be the kid he wanted me to be, and he was pretty rough on me when I was young ’cause I wasn’t living up to his expectations. So, I’m always looking for some way that we can connect as adults, rather than as the standard-issue dysfunctional/disappointed parent/kid.

Anyway, I was totally psyched about having thought of this idea, and I was certain that another friend of mine (who is a lot like my dad) had told me about it. I went into all this detail about this concept, moving through it somewhat gingerly, so I didn’t miss any of the details or nuances… trying to sound halfway intelligent… getting kind of insecure, ’cause my dad was getting quiet like he always does when he’s about to correct me or criticize me… just soldiering on with this idea, trying to flesh it out and make it sound out loud like it sounded on the inside of my head.

My dad kept getting quieter and quieter, and I got more and more nervous, and I started talking really fast about how I’d heard about this idea from a friend of mine… Eventually, the conversation petered out, and my dad went off to do something else. He seemed like he was upset with me or something, but I couldn’t figure out what I’d done wrong. 43 years old, and I’m still trying to figure out why my dad is miffed at me… It’s kind of sad.

Well, long story short, after a few days, I suddenly remembered that my dad was actually the one who had told me about this concept I’d been discussing. It wasn’t my friend, it was him. He’d told me about it either on the phone, in an email, or during one of my past visits. And when I was going on and on about my friend and their ideas and the details of what “they had told me”, I was actually repeating back almost verbatim what my dad had told me about, as though I had good sense.

How humiliating. I had been so very, very wrong about some very key ideas, and yet I had been so utterly convinced that I was right. And there I was, a grown adult, still trying like crazy to win my dad’s approval, like some little kid who’s got no clue. And there my dad was, getting that same old look on his face that said, “Here they go again… what a liar… what an idiot… space cadet… dufus… dork. I can’t believe this is my kid — 43 years old, and still telling tall tales. When will they ever learn?”

Confabulation is no friggin’ fun. Especially in 20/20 hindsight.  It’s inconvenient and exasperating for others when it happens, it’s disorienting for me when I’m in the midst of it, and it’s humiliating for me, when I figure out later that it happened. I just hate it. But I’m not sure what to do about it.

I’m not sure if there’s anything to do about it, other than educate the people around me about what it’s about and how/why it happens. The only problem is, figuring out how to educate them. Because by now, after a lifetime of this foolish consistency, a lot of people who are close to me have a hard time believing me, to begin with.