I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.
I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.
I think I’ll read that book again. I think I read it years ago, and I need to read it again.
I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.
I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.
As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.
That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.
That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.
I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.
And so I will.
I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.
I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I know I need to do. And just keep moving on.
The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.
Will the world step up and help me with my problems? Not if I don’t ask.
Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.
I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.
A new chapter is on the way, and I’m actually looking forward to what’s to come.
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.
I have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:
In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…
It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.
Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.
Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.
The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.
Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.
But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.
The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.
And that’s fine. It’s just fine with me. So… onward.
After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.
Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that
Brain Injury Recovery is Possible.
I should know. I’m doing it.
and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.
Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.
Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.
Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.
Early intervention with the right information can help to reduce the impact of mild TBI / concussion.
It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.
And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.
Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.
In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).
So there it is — why I do this, and what my mission is.
I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.
But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.
So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!
I keep sleeping in past 8 a.m. This is new, since I returned from my business trip. This morning, my spouse had to wake me up at 8:15, asking if I was planning to go to work today.
Well, yes, I had planned on it. But if I don’t have to do it, so much the better 😉 No, really, I hoisted myself out of bed, did a shortened version of my morning exercises, and made my breakfast. Now I’ll do a quick post before taking off for the office.
I got 9-3/4 hours of sleep last night. I think that’s a record, of late. The last few nights, I’ve been sleeping from 10:30 till 7:45 — even past 8:00 — which has been putting me at close to 10 hours, for the past three nights.
And I didn’t even realize I was that tired.
I guess it’s all catching up with me — and not only from the business trip last week, but from the past 10+ years of grappling with sleep issues. I’ve been exhausted for so long, I don’t even know what it feels like to be fully rested. And my neuro thinks that it’s one of the root causes of my dizziness and lack of balance. My old neuropsych said that sounded “preposterous”, but if the brain is in charge (at least in part) of your sense of equilibrium as well as coordinating your movements, and your brain is tired, then doesn’t it make sense that a tired brain would lead to an un-balanced body / proprioceptive sense?
That seems common-sense to me. But I’ll let them fight it out on the experts front.
Plus, not everyone metabolizes it the same way, so saying it’s benign in every single case — especially mine — is pushing it. And that’s beyond pointless. And a little worrying.
But on the bright side, my own situation is worlds better — at least for now. I may have to start setting a clock to wake me up by 8:30, if I don’t wake up, myself. I’m accustomed to waking up at 5:30, but I can do with out that, for sure.
Aside from the jet-lag and time-shift that came with the business trip, I think another thing that’s really helped me relax and sleep more, is taking some concerns off my plate. I’ve decided I’m not going to go back to school to finish up the B.A. I failed to get, 30 years ago. I was in trouble with the law, I was in trouble with my family, I couldn’t stay steady with anything I was doing, I was with a bad group of people who were very self-destructive, I was out of money, and I was too booze-addled to make good decisions. Finishing my degree just wasn’t possible.
My current employer pays for both graduate and undergrad education, so this would have been the perfect opportunity for me to finish my degree. But let’s be honest — there is no way I can hold down a full-time job, take care of my spouse, and take care of my own health, AND go to school, even part-time. Even doing one course, would be too much for me. Two to three hours of classes a week plus reading, plus studying for tests… with my learning differences, and my crushing fatigue… there is no way that could work.
So, after having this bright hope that I might be able to do it, I let that go a few weeks back. It feels like a surrender of something I’ve wanted with all my heart for so many years, but it just doesn’t make any sense. If I ever find a way to support myself that doesn’t involve being at an office and constantly dealing with people for 8-9 hours a day (and beyond that, considering all the emails and texts that come in at all hours), I’ll consider going back to school. But not if it puts me in debt. And not if it destroys my quality of life.
The wild thing is, ever since I let go of that plan/dream/ambition, I have felt so much more relaxed. Yes, it’s a loss. Yes, it’s disappointing. Yes, I kind of feel like I’ve failed. But this frees up that part of my brain that has been connecting my future success to the way I was always taught I could succeed – through getting degrees and adding qualifications and certifications that come from others.
As it turns out, I realize that I really am on a different path than that. I belong on the frontier. My great-great-grandparents were pioneers who traveled to the West when it opened up, and they paved the way for others to follow them. I’m actually not happy about some of the things they made possible — the Dust Bowl, rounding up Native Americans and putting them on reservations as well as genocide against this country’s first residents. That’s a hard legacy to carry. But at the core, at the center of it all, I am essentially a pioneer, not someone who settles spaces that others have opened up. And I’m the kind of person who thrives in unstructured environments where the rules have yet to be written.
So, I’m freeing up my “brain space” to make room for my new work direction. I’m making the most of my current job stability to really think about where and how I want to work in the future. I’m not rushing out to find a new job, right now, because I need time to think and really get clear about what I want to do. After years of hard work and sacrifice and doing a lot of jobs that I didn’t want to do because they were good experience, I’m finally at a place where I can literally pick and choose the direction I want to go in. I have the experience that others really, really need, and after years of rehabbing with a neuropsychologist, I once again have the temperament and behavioral control to work effectively with others.
I was this close to being able to do that, back in 2004, when I fell and got hurt. I was 18 months away from cashing in on my shares, that would have let me pay down my house and refinance the remainder at a very attractive rate. I was 18 months away from financial independence, which was no small feat for someone without a college degree, who everyone said would never get far in life because of my failure to complete pretty much anything I started. I could see the light at the end of the tunnel, and it wasn’t an oncoming train. It was my future – the future I had worked so hard for.
Then I fell, and everything fell apart.
I’ve been rigidly locked onto the idea that I had to finish my degree, in order to get anywhere in life. But in fact, that falls back on thinking from when I was a teenager. As an adult, I’ve always been a pioneer, a leader, someone who ventures into spaces that haven’t yet been explored. The things I’ve done, have been things that nobody else thinks are possible.
But I know they’re possible, as do the others I work with.
Now I need to look again to the future and find where I need to be. Not just where I am right now, but where I need to be, on down the line. I want to make the best of everything I’ve got, and take it to the next level.
And so I shall.
Holy smokes, it’s amazing what some extra sleep will do for you…
One of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.
After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.
Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.
After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.
The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.
Because A) We haven’t had the chance to learn from our last mistakes, and
B) There’s a part of us that actually thrives on those stressful situations.
So, it’s a vicious cycle.
And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.
This is the start of a step-by-step description of how I am finding a new neuropsychologist. My current one is retiring and moving away, so I need to find someone new who can help me – preferably in ways that my current neuropsych (who I have been working with since 2008-2009) has not been able to.
We all have our strengths and our weaknesses, and The Good Doctor is the same as anyone else. In the ways they have helped me, they’ve done a stellar job. In other ways, they have not helped me at all, and in fact, I feel as though I’ve lost ground, in part due to their influence and unwillingness to address issues I’ve raised.
When I first came to them, I was very unclear about many, many things. I was also struggling terribly with communication and being able to hold a two-way conversation. I had a lot of old ideas that I’d picked up from others, which were really holding me back. Heaven knows, I had plenty of chances to be on the business end of society’s proverbial cattle prod, and it didn’t help my self-esteem. I also was burdened by a tremendous overload of stress hormones and bad habits I’d picked up from years of using stress to keep my brain feeling awake.
There have been specific physiological/logistical reasons for my “behavior choices” which I never fully realized till I started working with The Good Doctor. And in many ways, my progress has really been fueled by my own willingness to question their judgment (later, after I left, as my brain doesn’t seem to work fast enough to piece arguments together while I’m in their office). It sometimes takes me days to realize that I think they’re really full of crap, but then I figure out whyI think that, and a real & valid solution comes to mind, to replace their cockamamie suggestions.
I won’t get into all my gripes here – suffice it to say, I now know a heckuvalot more about how to choose a neuropsych, than I did back in 2008, when I was searching high and low for help.
And I’m in a much better frame of mind — and I have the proper skills — to go looking for someone who can help me “hack” my brain, understand the places where it comes up short, figure out strategies for addressing those issues — and also figure out where I’m strongest, and how I can really pump up the goodness that comes out of that.
Here are the steps I’m following, to find myself a new neuropsych:
Figure out what kind of schedule will work for me, based on my commitments and energy level.
Set up appointments to talk to my short-list of candidates, and see who I like. Find out the answers to the questions from Step #4 above. Make notes on my impressions — before, during, and after.
Discuss my notes with my spouse (or someone else whose judgment I trust), to see what they think.
Sleep on it. Pick one. Go see them.
Be clear about what my expectations are, what kind of timeframe I’m looking at to work with them (will it be related to a length of time, or a specific issue I’m having issues with?), and what their expectations are, as well.
Commence the continuation of my rehab.
This seems like a decent list.
And with this in mind, I need to get out my TBI symptoms tracking worksheet (Download the Daily Experiences Journal (Wide) – Word Document here), and start using it again, so I can have a better idea of where I am, relative to where I’d like to be, both now and in the future. I may even modify the sheet that I have to focus on the issues that are most pressing for me (rather than being a laundry list of all 84 ways TBI makes my life miserable.
Back in 2008, I was tracking my symptoms on a daily basis — and I collected a lot of data. But it was too much. Now I know that I need to stick with the main things and identify actual patterns in my symptoms, so I don’t overwhelm my docs with all that information. They’re on information overload, as it is.
I don’t want to be cruel 😉 To them, or to myself.
So, off I go to print my daily tracker — and update it to have only the issues that are bothering me right now, in ways that I’d like to fix.
After that, I’ll take my long walk down the road, to see what I can see, get the blood pumping, and then for my nap.
So, after my fall in 2004, something happened to my old sense of being able to reinvent myself at will. I lost my flexibility. I lost my fluidity. I lost my “old” Self — the Self who knew there was more to me than I knew at the present time.
That change didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be… as I had one instance after another of feeling and thinking and behaving not only different from how I wanted to feel and think and behave, but how I intended and expectedmy Self to be. Listening to myself fly off the handle over little things… Watching myself get so belligerent and argumentative over stuff that never used to bother me… Seeing my whole way of relating to others fall apart — getting all jumpy and antsy and aggressive — and never being able to really predict how I would be, on any given day…
One experience after another happened, to make me doubt and question who I was, and take me farther and farther from my Self. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone. I had always felt a close connection to God, Spirit, Creator, Higher Power (whatever you may call it), but after my fall in 2004, I just couldn’t be bothered. People around me would want to pray and meditate, and all I could do, was roll my eyes and get irritated.
That all takes a toll. Especially when your behavior is nothing like what you want it to be. And how I was, did not resemble me in the least. I found myself doing and saying things I regretted even before I started — but I was helpless to stop it. The worst part was, I didn’t feel comfortable talking to anyone about it, because it was so terribly painful for me, and I would start to cry, when I thought or talked about it. I was deeply, deeply ashamed of my behavior. I knew better. Why couldn’t I do better?
I just pulled away from people, over several years after my fall in 2004. Only after I started regularly seeing a neuropsychologist in 2008, did things start to turn around. They got me reoriented in the right direction, and after a few years, I started to be responsible again. I got my act together, bit by bit, and things really improved for me, all across the board.
But there was still a missing piece of it all, a missing part of me that made me feel like a stranger in my own skin — uncomfortable with myself, not feeling like I recognized myself. I tried discussing it with my neuropsych, but they didn’t seem to realize the dept of my distress — maybe because I kept it wrapped so tightly under this veneer of capability, that they never could have known how wrecked I felt inside.
In any case, they never directly addressed my dissolving sense of Self with me. They were more focused on how I perceived myself in relation to myself and to others. Maybe they knew all the time that I had to reconstruct a sense of who I was, in order to fully recover. Or maybe they just didn’t seem to think my identity crisis was that big of a deal.
In any case, the net result of it all, was that I ended up spending a whole lot of time coming up with ways that I could make sense of my own life in my own way. Keeping this blog has been a big piece of it, as well as finding new things that got me interested in my life again — things that I felt were brand new discoveries. Even if I had “discovered” them before (sometimes several times), the fact that they felt new to me, kept me going. It kept me curious. It kept me looking and searching. It kept me engaged in my life.
And it gave me the feeling that I wasn’t just rediscovering my old self, but I was actively creating a new one. As I reduced the stress in my life, I found myself able to enjoy things again. I didn’t worry about whether those things “mattered” or not — or whether I was really fully appreciating what they were about. I didn’t care if I didn’t follow everything in the scientific papers I was reading. That wasn’t the point. The point was about reading something that intrigued me — even if I didn’t actually understand 100% what was being discussed.
I also found myself able to learn new things, albeit slowly. I taught myself to juggle, and that gave me a huge confidence boost. I figured, if other people could learn it, why not me?
I got involved in different projects and different undertakings, and I even did a live presentation that was broadcast to a special interest group. I never went back to the group after that. The point was that I did my presentation to begin with. I made art. I took photos. I did volunteer work. I created picture books and animations about topics that intrigued me. Just for the sake of doing it.
And all along, when I felt like I was in uncharted waters or things were unfamiliar to me, I treated it all like a learning experience. A series of teachable moments. A time to not only discover parts of myself I had never noticed before, but to create a new understanding of myself that was bigger than the rigid ideas I had about who I was and what was possible for me and my life.
At some point, I realized that the more time I spent trying to recreate the lost parts of myself from before, the less time I was spending on creating new experiences and discovering new parts of myself. And I also realized that the more I focused on the new and interesting developments in my life, the less I was bothered by the troublesome new parts.
When I was totally focused on something fascinating in front of me, the light and sound sensitivities didn’t make me nuts. When I was caught up in doing something that mesmerized me, it brought my brain to life, and I felt like I could think again. When I was actively learning new things, I had a sense of hope that drowned out all the bad feelings from meltdowns and blowups that really wrecked my peace of mind.
I didn’t just want to restore what I’d lost — like filling up divots in a golf course. I wanted to go explore a whole new part of the countryside, far away from those mucked up 18 holes.
In a very real way, my restored Sense of Self is a result of things I did to recreate it — to have a new and bigger understanding of myself in the context of my life. Over the years, I’ve developed some really helpful techniques to help me just stay chill and calm, so I can pay attention to the things that really matter in my life — the things that I can control and manage. I find that as long as I take care of myself and I keep showing up, my recovery progresses. There are always set-backs, but eventually things come together, and I’m stronger than before. And I find new ways to redefine myself and my place in the world.
So, I’m going to stop writing now and go read some more works about identity after TBI. It turns out, there’s a ton of stuff that’s been written, and some of it is very good. I find people talking about people “rediscovering” their identity after TBI, regaining a sense of who they are, and so forth. For me, creating a bigger and more durable identity is so important — it’s not just about discovery, it’s about actively taking a role in re-making yourself in the ways you choose.
I’ve always done this. That’s what I need to remember. Ever since I was a little kid, and I got moved around a lot, shuffled from one school to the next, from one peer group to the next. I’ve always had to adjust and redefine myself. And adapting after TBI is no exception to that rule. The stakes are higher now, and I have no real safety net, so it’s even more important that I take responsibility for my Sense Of Self.
I hope what I’ve learned can help others, as well.
Yesterday was a good day. I was riding high on the boost I got from work, and the day turned out pretty cool.
The more I think about the compliment I got at work on Friday, the more it means to me. It’s really sinking in, and I’m “letting it in” (as my spouse urges me to do). I don’t like to get into patting myself on the back too much – no sooner do I get really comfortable, than the rug gets pulled out from under me, and I have to work my way back to a place that’s good again.
Over the past two days, I’ve been looking back at the way my life has developed — how it was in the days and weeks and months and several years after my TBI in 2004… and how I’ve re-ordered it in the meantime. I have made huge progress — thanks to getting regular support from folks who don’t treat me like there’s something wrong with me (it’s important to have some of them in my life, because so many people seem to think I’m not quite “right”), as well as constant WORK.
It’s been a long, long road back, through the disaster area that was my life for so many years. Like the tsunami in Japan that devastated so many lives in cities and villages, TBI tore through my life and trashed a lot that used to be reliable.
It sounds weird to me, thinking about how devastating the damage was, relative to my injury. I had a “mild” TBI — a concussion. I wasn’t knocked out more than a second or so. I didn’t end up in the hospital, hooked up to tubes and machines. I wasn’t in a coma. I didn’t have to relearn to walk and talk. But within a few years after my fall, my life looked like the picture of Japan above.
And at the time I realized just how bad things were getting, I thought the good stuff was gone for good. I thought Iwas gone for good. I couldn’t imagine ever coming back.
But apparently I have.
It’s been a balancing act — making concessions here and there, and pushing forward with things that meant a lot to me. There are certain things I had to let go, and other things that have come back to me.
Three things that I’ve had to change are:
How quickly I do things
My sleep frequency and patterns
How I live my everyday life
One thing I can’t do anymore is the “rush” thing. It’s confusing and exhausting, and I hate it with every fiber of my being. I used to get a charge out of it — a real rush. But not anymore. Now it just screws everything up. I’ve had to slow down a lot — for me, that is. Compared to others, I’m not going that much more slowly, but for me, it feels like I’m moving at a glacially slow pace, and it makes me nuts. But I have to do it, so I do.
Another thing that I’ve had to let go of, is staying up till all hours of the night/morning and then being able to get up the next day and go to work and be fine with it. That’s gone-baby-gone. If I don’t get at least 7 hours the night before, I struggle all day. I might not feel tired, but I can definitely tell I’m impaired. It’s just not worth it to me, to get all ragged around the edges and have to push through. Adrenaline is all very well and good, but it’s no substitute for a good night’s sleep.
I also need to actively manage my life with notes and reminders. If I don’t set reminders and keep notes for myself, I lose track of a whole lot of things I need to not lose track of. It’s pretty bad — especially when I’m tired. Sometimes I “rebel” and try to wing it – and then I learn again what a bad idea that really is. Keeping notes and reminders lets me focus on what’s in front of me, without needing to keep the reminders and to-do items in the back of my mind all the time.
I have to do a lot more preparation, too, than I used to. I need to preview my days and figure out what I’m going to be doing, and how. I need to actively manage my entire day, making sure I’m doing things at the right times and in the right sequence. If I don’t, it spells trouble.
Making accommodations for how I’ve become isn’t much fun. It’s a little depressing, to tell the truth. I want things to be like they used to be. I want my brain to be like it used to be.
But that’s not going to happen. Not like I think it’s going to be, anyway.
Actually, though, the accommodations I’m making for my brain are helping me in many unexpected ways.
It’s actually good practice to take things more slowly than I did before. This is not only because of my brain, but because of the greater complexity of my life, compared to how it used to be. Ten years ago, I wasn’t juggling my own logistical issues with the intense health issues my spouse has, along with being the only wage-earner in the house. Both of us were working and earning okay money, and we were both self-sufficient. Then the sh*t hit the fan, and I now have to manage a lot more for both of us, because my spouse just isn’t as capable as they used to be.
On top of that, my job is now more managerial than before. I’m managing projects and leading teams, so I have to factor in a lot more in the course of each day — and this spans not only this country, with coworkers in multiple time zones, but also overseas with colleagues in Asia and Europe to accommodate. Work has gotten way more complicated than it was, just a decade ago, and the nature of my work has changed as well. So, going fast and rushing to completion is not an option anymore. I need to consider a lot of things, including time zones and cultural differences — and also not rush myself and others in the process.
In all of this, sleep is critical. And my relationship to it has changed a lot. I don’t have a lot of downtime, each day, and I’m exhausted by the end of it all. It’s been that way for a long time, actually — and it got that much more acute after my last TBI. I had a lot of trouble with insomnia and sleep disturbances. Just getting myself to bed has been a challenge, over the years. But where I used to really fight it, now sleep feels like a little vacation to me, when I can just let it all go — disappear into a different world. It is the ONE escape I have, so I value it like never before. I don’t drink or smoke or eat a lot of junk food, and my vices are necessarily few and far between (they can really derail me). Sleep is the one luxury I have, I’ve realized, and since coming to that conclusion, it’s become easier for me to let it all go and get some rest.
As for my lists and reminders, they keep me organized. I’m so friggin’ organized (out of necessity) at work, that my calendar is a model for others. I spend a lot of time at work, moving dates around and trying to fit things together in a big-ass choreographed production. In fact, that’s probably the best way I can think about it — as an exercise in choreography.
Getting people dancing… moving together… and making a beautiful production out of it. It’s funny — watching dance irritates the crap out of me. Maybe it moves too fast for my brain, or it takes me too long to catch up with it. But I absolutely love still pictures of dancers in motion. The pictures of mastery in motion really inspire me — if they can do that (and how do they dothat?!) then what isn’tpossible for people to do?
Still pictures of dancers — especially black and white photos of modern dancers in motion — really inspire me. And my job as a project manager is to inspire people do to the equivalent in their own work, so that our projects come together in a unified performance.
And you know what’s interesting? In the process of accommodating my limitations, I’ve actually been able to extend what’s possible for me, above and beyond what I’ve done in the past. In some ways, losing my basic functionality at one level, forced me to learn to live at a completely different one.
If I hadn’t gotten hurt and gone downhill as badly as I had, would I have been forced to “bump it up” the way I have? I’m not sure. Other keys have definitely been getting the right information and also getting some support, but ultimately, it was the total unworkability of my past ways of doing things in my emerging life, that forced me to dig deeper and see what else was there.
Anyway, this post is going on way too long. The bottom line is, TBI trashed my life, but I have gotten to a point where it’s no longer a total wasteland without any hope for the future. I have a ton of hope now, and that’s for a good reason — because things are turning around in tangible, daily ways. I have something to show for all my work, and it’s good.
I had a really great day, yesterday. I got a big boost on Friday, after a hell week of missed deadlines, scrambling to catch up, and feeling like everything was falling apart. There were some critical missed opportunities and requirements that I completely lost track of, so I had to redeem myself — to myself, and my teams, both here and overseas.
But at the end of the week, one of my coworkers, whom I respect so much — they are level-headed and kind and have a memory like a steel trap, and they do a fantastic job of managing and supporting people — paid me the ultimate compliment. After I had sent out a status report on Friday afternoon about a project launching, they wrote back to me privately and said they were really glad I was “leading the charge” on that project, because I am such a rational and level-headed project manager.
That really made my day. First, because it came from someone who is an accomplished professional who does not dispense praise lightly. Second, because they sent it to me privately, which meant there wasn’t another agenda behind it. And perhaps most of all, because it signalled that in some truly significant ways, I have figured out how to overcome the damage of my TBI in 2004 — and indeed, the bulk of my life before that.
See, there are many thing that TBI has screwed up in my life — I get crazy tired over little things, I have intermittent troubles with things that seem easy for others (like following conversations, keeping up with things moving fast, sizing up situations in an instant, and being able to deal with bright lights, loud noises, and crowds of people). Many of the things that everybody else seems to love — going to football and basketball games, sharing meals with large groups of people, and running around like chickens with their heads cut off all weekend — those wreck me for days afterwards. As much as I’d like to do them ALL, none of them is practical for me.
But the thing that really destroyed my self-confidence, was the way TBI screwed up my ability to deal with stresses. Being rational and level-headed was not an option for me, for so many years, because I just couldn’t sort everything out and I would become a raving lunatic over it all. I’d either withdraw into my shell or start to yell and sound off. I’d throw things, slam things around, bite people’s heads off… generally act out, without being able to stop it.
And then I’d have to not only clean up my relationships with others, but I’d have to live with myself afterwards, as well.
Not easy to do. And it seemed like nothing I did could actually prevent me from flying off the handle again in the future. I would just snap — lose it — go off the deep end, sometimes over little things that I knewwere not worth the emotional outburst, but could not seem to stop.
Once upon a time, I was know for my calm in the midst of the storm. I was THE person who management assigned to impossible projects that were stalled, because I could pull them out of their tailspin and get them on the right track again. In a very minor way, I was like a first responder, who could rush to the scene of an emergency — run towards the chaos, not away from it — and rescue folks who were stuck there.
After my TBI in 2004… no more. At least, that’s what I thought.
That loss was the most debilitating injury of all — that mortal wound to one of the most key and critical parts of my identity, my “interface” with the world — my level-headed rationality, my ability to stay calm and collected, no matter what sh*t was hitting the fan around me. Losing that for years and years not only cost me my job, and nearly cost me my marriage, my home, my entire life, but also my sense of who I was, the sense of being “at home in my own skin”.
I didn’t actually feel like a real person for many years. I felt like an impostor — and I didn’t have any idea who I was really. Or even who I was supposed to be impersonating.
But then last week happened. And I didn’t lose my sh*t. I kept my act together, I ate my big slice o’ humble pie, I came up with an alternate plan, and I put the wheels in motion on getting things moving in the right direction. I talked to the right people, I connected the right dots. And by the end of the week, we had made progress and were back on track.
And the person I respect most in our group at work complimented me and said they couldn’t imagine a better person to lead the charge.
Wow. Just wow. I’m still just floored by it. I get a little misty over it, too. It’s just that huge for me.
After all those years of being unable to stop the downward slide into chaos and the destruction of my self and self-confidence… getting so many little messages from my brain and biochemistry, that I was not the same person anymore, and the old “me” was nowhere to be found, no matter how hard I tried… attempting and failing, over and over, to hold myself together and be the person I had come to know myself to be…
At last. At long, long last. I was able to make it through an impossible week, staying intact both in my mind and spirit, and in my outward appearance. Some say appearances shouldn’t matter, but in my work situation, they matter very much. It’s a trust issue. A credibility issue. Yeah, it matters.
And I delivered. I found my team had made some critical errors, and we fell short of the goal. But in the end, I got us back on track, and the next week is about keeping folks there. this can be done. I can do this. If nothing else, the leader of my team believes in me unconditionally, and that’s more than I ever dared to hope for.