What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

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Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

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.
fireball explosion
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.

Agitation

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.
galloping horse
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.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

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.

We do know this from multiple studies:

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!

 

Onward! … Together

 

After TBI or concussion – slower brain, craving stress

brain-firingOne 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.

So, what does our brain do? It seeks out opportunities to come alive — to feel like itself again. WOO HOO! And for a little while, when we’re stressed out over our procrastinations, or our altercations with others, or our other poor decisions made in the heat of the moment, we actually do feel alive. We feel like ourselves.

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.

You can read more about this here at:

A Perilous Relief

Just something to keep in mind…

Discovering a new identity after brain injury – or creating one? – Part II

I decide who I am

I had to run out the door to work this morning, before I could “finish my thoughts” on Discovering a new identity after brain injury – or creating one?, so now I’ll continue…

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 expected my 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.

We’ll see…

 

Finding my way through the country I used to recognize

Sometimes it all just goes away

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 I was 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 do that?!) then what isn’t possible 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.

It’s really, really good.

Onward.

The Ultimate Compliment

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 knew were 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.