I’m reading a Jason Bourne novel by Eric van Lustbader. He took over for Robert Ludlum and has been continuing the series.
I’m a huge fan of the “Bourne movies”. I love the action, as well as the scenes from Europe. It’s the closest I can get to traveling abroad, these days. Also, I really relate to the amnesia aspects of the story — at least, at the beginning. It reminds me a lot of how I’ve felt for many years, as though I’d lost myself to TBI.
The book I’m reading now features another undercover operative who’s got amnesia. He was grazed by a bullet and ended up in a freezing cold ocean, and when they fish him out, he can’t remember who he is.
I can relate.
But what I can really relate to, is the slow recovery of memories by Jason Bourne, as he goes through the motions of living his undercover life. There’s a lot he can do, that he can’t remember why. There’s a lot he’s capable of doing, that doesn’t make sense. That’s how it’s been for me for many years, with big pieces of my personality seemingly gone — maybe for good — even while I could do other things with as much skill as before.
I could find my way around a computer — I just couldn’t do the level of programming I used to.
I could interact with other people — I just couldn’t remember what they’d said to me, 5 minutes before.
I could drive and get around just fine, even learn to cook — I just couldn’t sustain the effort the way I used to.
A lot of things seemed to be lost — I have a list of them here. And a lot of them have actually come back to me. Like being able to read. Like being able to walk around outside without crippling anxiety. Like being able to go to the beach and sit on the sand. Like my sense of humor. And my sense of self. My sense of who I am and what I’m about.
My values. My goals. My morals.
It’s amazing — it’s like I had amnesia about who I was and what mattered to me. I’d completely forgotten. In some cases, I felt that loss. In other cases, I couldn’t imagine ever caring about those things, in the first place. Like my values. Like ever thinking anything was funny. The erasure, in some cases, was so complete, I had no awareness of even missing what I’d once had. And I had no desire to get it back.
But the brain is amazing. It’s resilient. It’s plastic. It heals and knits itself back together in amazing ways. I’m very fortunate, I know. Not everyone has this experience. But I have.
I wrote this Thursday morning… then I got busy. I’ll post it now.
It’s cold today. It’s a beautiful clear day, and I am off to an early start. I have an appointment with a counselor, who is helping me sort through my day today logistics. I really like this counselor, because they are not focusing on a lot of emotional stuff, rather on what I need to do from day to day to live my life well.
This works for me. TBI can make a person overly emotional in ways that do not make any logical sense. Every little thing can throw you off, for no apparent reason, so taking the usual emotional approaches to therapy is not as effective as a lot of psychotherapists think. In fact, if anything, it can actually be counter-productive in the worst ways ever. Trying to address neurologically-based emotional issues with psychotherapeutic techniques can actually make things harder to understand, emotionally speaking… which is exactly what happened to me, about 10 years ago when I was first actively recovering from my TBI issues.
Not many of my psychotherapists actually knew this, which strikes me as odd, even dangerous. I know it was dangerous for me. And I wish that my neuropsychologist had been more detailed and vocal in their reservations about me seeing a psychotherapist while I was in recovery for traumatic brain injury.
Anyway, that’s neither here nor there, and my life is back on track. And that’s what I want to talk about today.
I’d rather talk about How I got my life back on track.
I have talked a good deal in the past about Sense of Self, and how that impacts your life after brain injury. To me, this is by far the most critical issue in terms of recovering after concussion or brain injury. In fact, I would go so far as to say that it is the main issue in recovery from concussion or TBI. But at the same time, it is one of the least understood and and most underestimated.
Losing your sense of self sets the stage for all manner of behaviors and experiences that impede your recovery. The neuroscience is there, and it states very clearly that added stress impedes learning. And if TBI recovery is anything, it is learning to live again along different lines. If getting your brain back in working order isn’t about learning, I don’t know what it is about.
When the frontal lobe is injured, which is so very common in traumatic brain injury, it causes us to manage our emotions less well, and that can certainly interact with the limbic system. Other individuals, like Ken Collins, stress the importance of managing the limbic system, the part of the brain that is hyper emotional. I totally concur with his assessment. He should know. He’s a long-term survivor, himself.
When we get worked up over things, all of our energy is going into our emotional reactions, rather than figuring out what is really going on, and dealing with what is right in front of us. We can get so caught up in our interpretations of the fleeting meanings of different things, taking things personally, getting insulted and outraged over every little thing, and also being frustrated and embarrassed, that we have no energy left for regular functioning.
And that is a huge problem. Because the brain uses a lot of energy, and that is only for every day regular things, let alone extraordinary and novel situations that demand more of our resources to process.
So cutting down on environmental stress is very important, and that environmental stress also includes our internal reactions to it. Our internal reactions – at least mine – can make everything worse, and if you don’t have a clear sense of yourself,you were not secure in who you are, and you don’t trust yourself… well, that’s a problem.
Not being able to trust yourself, not knowing what to expect, and not having a clear view of where you fit in the world, is incredibly stressful. Self-familiarity, self-trust is so central and fundamental to us, that we don’t even know it’s there, half the time. We just take it for granted, and when it is removed, we can fall into an abyss of severe self doubt and crisis.
To me, the changes that take place in our brain, the abilities that we once had that are different now or maybe completely gone, the different reactions to our situations, and the deficits that we develop are far less less of an issue than the experiences we have as a result. The experience is what turns our situation into a tragedy, a comedy, or just another aspect of life that we need to adjust to.
Think about how much you have changed in the course of your life, even without a brain injury. You are not the same person that you were when you were five years old , 10 years old, 15, 20, or beyond. We change all the time. We change in reaction to the world around us. Our physical and mental abilities shift over time, and it is not catastrophic, but it’s part of a normal and regular development cycle.
But when brain injury shows up, that changes the patterns that we expect in our lives, and it makes it hard for us to know how to live.
Anyone who is alive is going to know what it’s like to be taken by surprise by unforeseen circumstances. Brain injury is no different, although it is on a much larger and more pervasive scale and of a higher order, than – say – a change in the weather, or change and scheduled activities at work or in your social life. Brain injury changes are deeply altering, even if they come from a supposedly “mild” injury. That is an inescapable fact of the injury.
The thing is, this is the sort of change that we can – and should – learn how to navigate. And we do that through adjusting and adapting and getting to know who we are after the injury. People talk about there being a “new normal” after a brain injury and that can be very true. I know it’s been true for me. The thing is, the “new” normal does not have to be dramatically less successful or lower quality than the “old”. If we learn how to adapt, and we learn how to learn our way back to recognizing ourselves, this can all simply be another aspect of her of our lifetime of developments, just as adolescence and early adulthood, and even aging are parts of the normal process.
So, how do you do that? How do you learn your way back yourself? For me, the secret has been all about routine. Predictability. Establishing set ways of living my life on a daily basis, so that I can and do learn to recognize my reactions and my experiences experiences, familiarizing myself with this new person I have become. There are certain things I cannot do the way I used to. I cannot program with the same complexity that I used to. I cannot simply jump in and learn new computer programming languages like I used to. I cannot push myself for hours upon hours upon hours of sitting in front of a computer, without paying the price four days after. I have to more actively manage my temper, I have to more actively manage my energy levels, and I cannot under any circumstances deviate from my eating plan for extended periods of time. Maybe a couple of days of eating more junk… but I cannot go longer than a few days off my diet without really feeling it.
I also cannot spend as many hours doing One Single Thing as I used to. I have to pace myself. But that’s not necessarily a bad thing. In fact, if anything I would say that it’s been long overdue. So, not all of the changes are bad, and not all of the adaptations are worse than my life originally was. It’s just change to me now, just like changing my job, or moving to another location.
In some ways, adapting to a brain injury can be easier than adapting to a new job, a new place of residence, or other life changes. I think that brain injury offers that those other changes don’t, is steadiness. It offers a new kind of predictability, if I watch carefully and study my situations. And it gives me the opportunity to really shape the outcomes with my own choices and my own behaviors.
In terms of other kinds of changes, I have to adapt to other outside shifts, whereas with brain injury it’s very much an internal process. And while the motivations and choices of other people may sometimes mystify me, inside my own head I have plenty of opportunity to get to know myself, learn about how my system works now, and adjust. I don’t always get that same opportunity with other people and outside situations, but I do have that with myself.
In the end, brain injury recovery is not a simple, straightforward thing. It’s complicated, and it’s different for each person. At the same time, it does have certain benefits and advantages that I probably never would have realized, had I not gotten hurt. I’ve had a number of concussions in the course of my life, and each one taught me something different. I’m not saying I’m glad they all happened, but if it has to happen, I might as well get something out of it. And I have.
Ultimately, we all need to make our own choices, and we all need to find out that’s our own paths. It’s not necessarily for me to tell you how to live your life, but I can tell you what works for me. And I can tell you what I have learned to be essentially true about the nature and experience of brain injury and recovery.
The main thing I’ve learned is: brain injury recovery is not 100% impossible, the way people have said for many years. It also isn’t what people seem to think it is. We might not regain every single faculty and ability that our brains used to have, but we can still develop other skills and other abilities that will help us to recover our quality-of-life, and bring genuine happiness — even where we were miserable before. It’s not about making the brain do exactly what it used to do. It’s about recovering your dignity, recovering your independence of thought, and regaining your self-respect. There’s more to that than brain function, and there are more ways to achieve it then by making your brain do exactly what it used to do in exactly the ways it once functioned.
I can’t say this often enough or stress it strongly enough – brain injury recovery is possible. I am doing it. I have done it. It is an ongoing process, and I will probably never stop doing it. But I have made more progress in the last 10 years than my old neuropsychologist had ever seen in 40 years of brain injury rehab work. I’m living proof – walking, talking, working proof – that it is possible to put your life back together and regain your sense of self, even if everything you once had feels like it has been taken away.
Anyone who says differently – that brain injury recovery is impossible – has not been looking in the right places, or hasn’t been talking to the right people.
But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.
So, I help out.
I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.
And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.
But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.
I slow things down, too. The fatigue is just crushing, at times, and when I push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.
On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.
I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.
We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.
Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.
On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.
And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.
But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.
And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.
It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.
It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.
This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.
It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that inTBI S.O.S. –Self Matters To Others. Who people know us to be, is also a big part of who they understand themselvesto be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.
Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.
I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.
As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.
Sometimes the wheels come off. And you just have to figure out how to deal.
It’s snowing again. It snowed a lot, the other day, and now it’s snowing again. I’ve been mainly moving snow with my shovel, this winter, pushing it aside, instead of using my snowblower. I need the exercise. I was turning into a lump. But today (or maybe tomorrow) I’ll use my snowblower instead. Winter’s got the upper hand today.
Whatever I do, I need to be smart about my choices. And that means using the resources I have – to save my back. Earlier today, I got out the snowblower, made sure it starts, filled up the gas can, and prepped myself mentally for a big day of snowblowing tomorrow. I might even do some tonight, before it gets completely pitch black. I need to move snow. And I need to use my noggin about it.
My back, shoulders, arms, and legs are all pretty sore. It’s good for me. I need the heavy exercise. It’s the one thing that actually helps me get rid of excess energy. If I don’t do heavy exercise on a regular basis, I can become irritable – and that’s no fun for anyone.
So, this winter, I’ve been shoveling. And it’s been great.
This storm, however, seems to have other ideas. So, I’m being smart and not pushing my luck.
And that’s progress for me, because once upon a time, I would push it. I would test my luck and keep pushing myself to go-go-go, even if I was tired, even if I was getting uncoordinated. I would wear myself out and then either be at risk of falling, or I would actually fall.
I almost fell, the other day, when I was clearing my drive. Black ice underneath silky, slippery snow. It was treacherous. I was careful. I didn’t push it. And I’m glad I didn’t.
I really do love winter, I have to say. The cold wakes me up, it makes me feel alive, and the snow is great to move. I love “playing” in the snow, shoveling it and moving it around. It’s just the ticket to get me out of the house and out of my head.
Today, though, I’m pretty much laying low… recuperating and letting my body rest. I’ll get plenty of exercise tomorrow, I’m sure.
Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.
BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.
Not everybody will experience these problems and their severity will also vary.
BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.
And I sometimes never get a second chance, because they've made up their minds about me in a negative way.
This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.
BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.
In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.
So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.
Explosive anger and irritability
If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.
BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out.
Lack of awareness and insight
The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.
BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).
It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good.
I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.
I’ll continue this post in Part 2. Watch this space for notifications.
After nearly 50 years of tying my shoes in a way that makes the laces stick out in weird ways, I’ve finally started tying them in a way that makes them neatly lie flat across my shoes.
I’ve been bothered by my “askew” shoestrings for as long as I can remember. When I was a kid and first learned to tie them, I was happy I’d just figured out how to tie them. But the way they lay — all scrunched up and crooked — really bothered me.
I told my dad once, and he said I could tie them differently, by looping the shoelaces around in the opposite direction. At the time, it was too much for me to wrap my head around. It didn’t make sense to me. Plus, I’d only mastered the motion (and muscle memory) of tying them properly in the one way I knew how.
And I was afraid I’d lose the tenuous skill I’d already learned.
Years later — nearly 50 years, to be more accurate — I’ve finally decided to tie them in the way that makes the loops lie flat across my shoes. They’re less likely to trip me up, that way. And I like how they feel better than the old way.
I’ve been doing this regularly, for the past couple of weeks — making the concerted effort to tie them in the way that makes them neat and tidy.
But you know what? I keep going back to the old ways. Back to the old habit of tying them in a way that’s really second-nature to me, after doing it that exact way for all these years.
And that’s taught me, yet again, about how and why TBI / concussion can be so difficult to recover from. The “wiring” that you’ve trained to use in a certain way — habits of thought and action, movements of your body, ways you think about things, routines of sleeping and waking — may have changed in ways you cannot see, but it’s all switched around, so you have to find new ways of doing things that you’re used to doing in one certain way… since forever.
And no matter how well you train yourself to do things the new way, no matter how much conditioning you have, no matter how well you like the new way, no matter how badly the old way has been disrupted, your brain and your body are still going to try to do things the old ways, the ways that they think they still know how to do.
They don’t, of course… or maybe they need to be intensely retrained. But they don’t realize it. And that’s one of the hallmarks of TBI: not knowing what’s messed up, until it’s too late (and then, sometimes not even realizing it yourself).
No matter how convinced I am of the new way of tying my shoelaces… no matter how much I may like the new way of doing things… no matter how much I used to hate the old way of doing things… that’s what my brain and body and muscle memory are used to. It’s what they feel comfortable doing. Even if it doesn’t work.
So, I have to keep after it. Like all of us who are dealing with somewhat broken brains / disrupted wiring. Our systems will go for the way that they think is easiest and what’s most familiar. They just don’t know it won’t work out.
And that’s what we have to keep learning and relearning and readjusting to, over and over again. No matter how long ago the injury happened.
It takes a ton more work and effort and attention and focus and determination to recover — even from a “mild” traumatic brain injury. That’s what most people don’t understand… but every long-term survivor knows, all too well.
The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.
As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.
You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.
The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!
Some of my own challenges have been:
Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
Keeping cool with my spouse, when tensions get high.
Staying on my exercise routine.
Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.
Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.
Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.
This holiday season has been quite different from past years. Both of us were too sick to travel for Thanksgiving, so we stayed home and ate turkey in the peace and quiet of our own company. It was nice. No yelling, no screaming, no wild flurries of activity and trying like crazy to catch up with family members we haven’t seen in a few years.
There really wasn’t enough time to do everything — and my side of the family has a bad habit of trying to cram everything into a few days, which is exhausting and disorienting and sets us both up for a whole world of hurt, when we travel on to the rest of the family.
We were also a lot shorter on energy, this year, than we’ve been in the past. My spouse’s mobility issues — severe pain and limited range of motion — make it next to impossible to get around easily, and the impatience of others doesn’t help. It’s not a total disability, but it’s a significant limitation, which others cannot seem to understand. My spouse looks and acts perfectly normal when sitting down and chatting, or talking on the phone. They’re not obviously cognitively impaired. So, somehow that gets into people’s minds that they’re really not that bad off.
And that’s a problem, in itself. Because then people expect unrealistic things of you, and they don’t treat you very well, when you just can’t keep up with the frenetic pace.
Anyway, that’s only half of the problems we avoided by staying home and keeping to ourselves, this year. The other half, is my anger, fatigue, frustration, and bad behavior issues, which have been flaring up, now and then. I seem to have a shorter fuse, this year, than in the past. I think it’s really due to my work situation, which is mighty “dynamic”, these days. There are layoffs pending in the not-so-distant future. And while I feel pretty confident about my own situation — not only am I getting along with my new colleagues better than just about anybody I know, but I’m also feeling really strong about my professional prospects.
I’ve come such a long way, in the past 10 years. It’s pretty amazing. 10 years ago, I was pretty much of a train wreck — spending money left and right, completely out of control with my behavior, my anger, my self-management.
And I had no idea why it was — or that it had anything to do with TBI.
Now I know better. And now I’m doing better.
It’s just other people’s “stuff” I need to deal with. There are a lot of worried, anxious people, and that makes them difficult to handle.
But for myself, my prospects are looking good, so I’m not worrying about it. Main thing, is taking care of myself, doing the best I can, and not letting the world around me bring me down.
So, I’m finally getting into the holidays. Dealing with them as they come… and getting my shopping and decorating done, a little bit at a time. It’s taking a few weeks longer, than in past years, but I’m not worrying about it. At least it’s happening. And the way I’m doing it all — measured and gradual and not stressing about it — really makes sense for where I and my spouse are at, right now. This time is one for me to be reflective and slow down, not get caught up in everybody else’s dramas. They can go on without me. I’m fine where I am.
Just by total chance, a week or so ago, I found myself talking to someone who had a stroke in 2007. Unless they’d mentioned it, I never would have noticed. They’d had four months of recovery, then they got back into their life. And while we didn’t talk that long about it, I got the impression that they hadn’t gotten any help with really understanding their situation after their stroke.
When they ran into their neurologist at the hospital, a few months later, they got a tip about how certain things they were doing were just not very helpful at all. Things like beating themselves up, because they weren’t doing a good job at something… things like getting angry and upset about stuff going wrong in ways that were directly related to their stroke… The neurologist gave them some insight into what was happening with them, and a better way to deal with it.
It was good that they chanced upon their neuro. It’s just too bad they didn’t get that insight sooner, so they could relieve some of their suffering — maybe even prevent it.
But they were amazed that I’d been able to find help with my own brain injury. They asked a number of questions about how I recovered, how I got myself back, how I retrained myself in certain ways. They seemed downright amazed, that my path for the last 8 years had even happened.
And it left me both happy and grateful that I found this path… and sad and frustrated that they hadn’t — that thousands upon thousands… maybe even millions upon millions of people hadn’t.
Here’s the thing that gets me about brain injury recovery — there is so much that’s known, there are so many tips and resources and a wealth of information available about what happens to the personality when the brain is injured. But there doesn’t seem to be any uniform or standard way of communicating that to people. And so, we suffer. We really, really suffer. And it’s not just the brain-injured folks who suffer — everyone around us, especially our loved ones and those who are a regular part of our lives, joins us on the big proverbial float in our Pain Parade.
It’s actually pretty bizarre, if you think about it. TBI happens 1.7 million times a year in this country, alone. Actually, according to the CDC,
So, the 1.7 million number (which has been used for years, now) actually looks low. Add to that the numbers for stroke (nearly 800,000 Americans have a stroke each year, and 130,000 of them die from it), and other kinds of acquired brain injury (anoxic, for example, from losing oxygen to your brain), and you’ve got in the neighborhood of 3+ million Americans who have experienced a brain injury.
That’s just in this country. And that’s not counting all their family members, co-workers, community, and extended social connections.
Brain injury is a thing. It’s a big thing. And yet, somehow, we can’t figure out to tell people who’ve just had a brain injury, what’s happened to them, what they might experience as a result, and how they can take steps to recover?
This makes no sense.
And it makes me angry. Because a lot of people are suffering needlessly. Really, really needlessly. Just having the most basic information about brain injury helps so much. Finding out what happens during concussion or stroke — and then things to NOT DO (which medical professionals know about)… as well as WHAT TO DO — many of those things are simple and straightforward, and they all help a person make sense of their situation and chart a path forward.
Maybe it’s professional caution. Doctors don’t always know what to expect, and in any case, every brain injury is different, so every type of recovery is going to be a little different. Or maybe it’s lack of time. Or maybe it’s because doctors delegate education and training to rehab and therapy folks, who presumedly have a more extended working relationship with brain injury survivors. Maybe they want to limit their liability, in case their promises don’t come true.
Regardless of why that is, the fact remains, there’s a huge, gaping hole in the support of brain injury survivors — TBI, stroke, ABI, you name it — that seems only to be filled by people in the business of doing so. And from where I’m sitting, that’s a huge problem, because the profit motive becomes the most important thing. First and foremost, if you have to make money to survive, you’re going to focus on making money. And then you end up making a lot of choices that you wouldn’t necessary make (or have to make) otherwise.
So, the care you provide is necessarily compromised.
And the slippery slide begins… and continues.
Where does that leave the survivors? Or the people around them who struggle to understand what’s happening? Where does that leave the wider community who has lost the full participation of someone who is important to others, in large or small ways?
It leaves us nowhere. In no-mans-land. In limbo. Uncertain. Without a clue. And eventually, without hope.
A lot of lives are irreparably trashed, because of lack of support — even the most basic explanation of what’s happening… simply because someone couldn’t figure out how to explain a brain injury to the survivor, as well as to their immediate circle of family and friends.
How ironic, that advertisers can figure out how to explain and sell the most inane crap to just about anybody with a pulse, but nobody can figure out how to explain something as important as the logistics of brain injury to the people who desperately need to know.
I just had to reset my Twitter account. I forgot my password, and I did that thing where you have them text you a 6-digit pin so you can reset your password.
I got the text on my phone, which was in another room, charging. And just to see if I could do it, I looked at the 6 digits and tried to commit them to memory. Then I walked in the room where my computer is, and I was able to put in the digits with no problem. 880-765. Just so.
Woot! That is so amazing. It might not seem like much, but seriously, this is a big deal for me. Not only does it mean I don’t have to be slowed down by having to write down (relatively) short strings of digits, but it also restores a part of myself that I was always really proud of — being able to remember strings of numbers.
I can also remember the 16-digit number of the credit card I use most frequently (no, I won’t be sharing it here). I can remember the security code, as well as the expiration date. The numbers all have a recognizable pattern to them — certain repetitions of sequences of numbers that I only recently recognized. Years ago, I would have noticed those sequences and repetitions of patterns right away, but I’ve been using this credit card for quite some time, and it only recently occurred to me that I was looking at a string of numbers that’s actually pretty easy to remember. So, that’s huge progress for me — not only the remembering, but also being able to see the bigger picture of the overall pattern of the entire number.
Back in the day, just a few years ago, I would have been unable to remember 6 digits in a row. I couldn’t even remember 4 digits. Anything more than 2 or 3 was a stretch for me. It was a big loss for me. Even though it seems like a little thing, not being able to remember more than 2 or 3 numbers — in today’s PIN-driven world — puts a big crimp in your ability to just live your life. It’s a problem. Everywhere.
For work, when I login remotely, I have to put a PIN into the login screen, and that used to not be a problem. Once upon a time, I could glance at an 8-digit PIN and punch it into the computer with no problems. Then I hit my head in 2004, and that stopped working. It was a real problem, because I was working on highly secure systems, and a PIN was required every time I logged on in the morning. I used to get so flustered about not being able to remember the digits, but needing to write them down and then punch them in, one at a time. I also had to really take my time, because I would literally forget what numbers I’d just put in, 2 digits ago. I got so upset. I used to be able to remember 8+ digits at a time. But that went away when I fell in 2004.
I’m still working on remembering my digits. I’m still working on my memory, period. And my progress has been “uneven” to say the least. Every now and then, though, I get a clear view of how I’m improving. And it’s not just some flash-in-the-pan exception, but something I can do over and over.
Like remembering my credit card number – all 16 digits, along with security code and expiration date.
Like remembering a unique 6-digit PIN that I’ve never seen before.
Like remembering to do things (and buy things at the store) that I would normally completely forget.
It’s a process, to be sure. It takes time. It takes practice. But all the hard work is paying off in a very big way.
And that makes me very, very happy. Just gleeful, in fact.