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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And it just gets better…

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’m having another great day, today.

I’m surprisingly productive on my days “off”, and I’m getting more done than I realize. Before I lay down for my nap, a couple of hours ago, I made a list of all the stuff I got done, and it was … a lot.

I’m not taxed, though, which is good. It just feels regular. Like I’m just living my life like I want to.

And I am.

One thing that happened earlier, was a phone interview for a job I’d applied for a couple of weeks back. I know I’d posted about how I really need to be realistic and not push myself intensely — especially with a long commute.  And it’s true. The thing is, the people I talked to and the job we discussed all sounded great. Of course they did. It was an interview, and everybody’s on their best behavior. But what came out of the conversation was actually a wider and more interesting kind of opportunity than they originally offered.

The scope of the job now encompasses things I’ve been doing for years, but they don’t apparently have anyone to do. Things like make their website go really, really fast. Things like put a new web metrics package in place. Things like train developers on best practices.

So, that was actually exciting. When I think about where I am now — boxed into a small corner of the world, without the opportunity to strengthen certain skills (which, by the way, are the ones that really pay well) — and I think about the future — more of the same that’s going to make me more and more specialized, more and more boxed-in — I have to seriously consider any and all alternatives.

Anyway, if my current employer really wanted to keep me, they’d pay me like they mean it. They haven’t done that. If anything, they’ve reneged on their promises and shorted me thousands of dollars.

That’s not cool. It’s not-cool enough to make me leave. They should know better. They do know better. But they won’t do better.

If I move, it will be an adjustment. A longer commute. A new bunch of people. Unpredictable politics. Having to start from scratch.

Then again, that’s what I’m dealing with right now. And that’s happening at an established job with a company that’s an “unknown quantity” at this point. Who knows what will happen with them? Nobody knows. All anybody has, anymore, is rumors.

Note how well I’m talking myself into changing jobs, when just a few days ago, I was in a much different frame of mind. I’m clever that way… But seriously, I have to weigh all the pros and cons of both situations. And I can’t say I’d mind being closer to home, especially during the winter months. I also won’t mind not being “threatened” with obligatory trips to India, which has never been something I wanted to do, but my boss has been hinting at. I can work effectively with people from India. I just can’t travel there comfortably. Just crossing the USA is disruptive enough for me, and exhausts me sufficiently to wreck my life for weeks at a time. But India?

No thank you.

Well, it’s all a trade-off. I’m fortunate that I’m in this situation, to begin with — in-demand in the midst of a very challenging job market. These are good problems to have. So, for that I’m grateful.

I think I’ll drink my afternoon coffee now.

And get back to enjoying my day. The obligations I thought I’d have this afternoon have magically dissipated into the ethers, so I have time to read and write and think — imagine that. And I’m OFF for the next four days, with just a few to-do items here and there.

Good heavens, it’s great to not have to do anything.

For once.

Regaining my Dignity at the end of “Most Excellent Day One”

zen stones in waterI just woke up from my nap. I lay down for 2 hours, and I could have slept for three or more.

It felt amazing. I need to make supper, now. Get back on track. But I feel so amazing, after just a little bit of sleep.

And I know there will be more where that came from.

Because I have the next week off. Actually, a week and a day. It’s amazing. Fantastic. Just what I needed.

And now I can regain my dignity.

See, it suffered for many months, while I was working on this Mammoth Project. I’ve been over-worked, (of course) under-paid, I have been doing the job of 5-6 people, and I haven’t gotten a lot of support from my boss throughout. Just criticism from afar. Or meddling from afar. Or what seemed like outright sabotage. I’m not sure what’s in it for them, to make me look like I don’t know what I’m doing, or to override me, but bottom line, they did more harm than good.

Anyway, the first phase of the project is over, and now I can look towards the next phase — about two months off — and leverage the foundation I’ve built with people, thus far.

And start living and acting like myself again.

Catch up on my sleep — and stop making mistakes because my brain is mis-firing.

Chill out my stress levels — and stop getting overwrought and yelling at people.

Find the good in what I’ve accomplished — and stop feeling so self-conscious and insufficient, because some things didn’t go 100% according to plan.

I can actually hold my head up again, after nearly a year of feeling trampled by other people’s successes. I can actually get my bearings again and stand firmly on both feet. And I can get past the dismay at my brain failing me, time and time again, under conditions that seem custom-made to trip it up.

I can get my dignity back to where I’d like it to be.

And that started today, on this Most Excellent Day One (of 9), as I got to not worry about The Project for a whole 24 hours.

I’m looking forward to the next 8 days.

That’s the understatement of the year.

Now, I can sleep

Christmas wrapping
The final push is on…

I’m giving myself an early Christmas present. I’m not going to make the Big Trip to see my extended family for Thanksgiving. I’ve been working long hours for weeks and weeks (months, really), and I feel like I’m on the verge of getting really sick.

My spouse isn’t all that keen on spending all that time in the car, either. And during the most heavily traveled time of the year.

It just doesn’t make sense for us.

Yes, it will be unfortunate that we can’t see our families.

But it’s a massive relief that we’re not making the trip. It’s exhausting in every sense of the word — to the point where it’s not really safe to be doing it. Traffic. Potential for accidents. Family frustrations. All of it is just too much to handle, right now.

What I really need is sleep. Like, an extra 100 hours, to make up for all the lost hours of the past weeks and months. I need to retrain my system to level out, to calm down… to get out of the sympathetic bias that’s just torn the living crap out of me. I’m shaky… nauseous… dizzy… unsteady on my feet… Yeah, I’m in no shape to do much of anything for a week.

And that’s what’s going to happen — not much of anything.

I have off work all next week and the following Monday. I don’t have to go back till Tuesday the 28th.

I won’t have to set an alarm. I won’t need to keep my phone by my bed. I can just lie down and sleep, without worrying about being late for things, or forgetting things, or saying stupid things, or messing things up. I can just be. And recover.

And that is a beautiful thing.

Onward… back to bed.

Work lots, rest more

lone rower on waterYardwork has been my life for the past 2 days.

Now I have cleared almost all the leaves from my front and back yards, and I’m feeling it.

Oh, how I’m feeling it.

So, it’s time to rest. Recuperate. Take a few Advil and let sleep do its restorative work.

This feels incredibly good — not the pain I’m in, rather, the state of having gotten a whole lot done in the past 22 hours. I still have a ways to go, but I have made incredible progress. And my body will eventually get back to where it should be. More muscle for the winter. I can use it.

I have my running list of prep work. I still need to get the snowblower serviced, and I need to call the chimney guys to clean the flue and get the leaves out of my gutters. But that will happen. Heck, I might even fire up that little generator to see how it does with the pump. If I don’t have electricity, I don’t have running water, and that’s no good. I got myself a generator last year, but I never fired it up. I should do that. And test out running the well off the generator.

It’s all happening.

And it’s good.

Onward.

Righted again

I’ve been home for a little over a week, and I finally got a full night’s sleep, last night. I’ve been working off of 2/3 of my usual “dose” since last Friday, and it doesn’t do me (or my work) any good.

Whenever I travel for work, for every 4 days I spend there, I lose an additional 8 days afterwards just to catch up. And I also lose a few days ahead of that, while I’m preparing and putting all the pieces in place to keep my (and my spouse’s) life going per normal.

Normal! Ha. That’s a good one.

Well, anyway, things are back to normal again. I got up after the sun was up, and I had my exercise and healthy breakfast. Now I’m organizing myself for the weekend, so I can catch up on the chores and activities I couldn’t do last weekend because of the fatigue and also competing activities.

I’m also looking for a new job that doesn’t involve travel. I’ve got a rich and full life, and I don’t need to be hauling my a** all over creation. Not after all these years of working as hard as I have. Surely, there are jobs that don’t require that.

Of course, the ones that do involve travel tend to pay better. But it’s all a tradeoff. And ultimately, if my quality of life takes a dive, is the money actually worth it? Not sure…

Fortunately, there are other options. I’m exploring them. And for the time being, as long as I can get decent rest and keep myself from getting too scattered, I’m in a good place.

I’m righted again. And now it’s time to do some yardwork.

It’s all an adventure.

Onward.

After #TBI – Give myself some extra time. Be generous to myself.

capacitors
I tend to run out of energy

It’s pretty easy for me to push myself past common-sense limits. I get my heart set on being able to do something or being able to do something a certain way, and then when it doesn’t work out, I spend way too much time being hard on myself about it.

That helps no one. It really doesn’t help at all.

So, I need to be generous with myself and give myself the extra time I need to do things.

I’ve figured out what to do about my work situation. It occurred to me, last week, that I’m 2.5 years away from being old enough to qualify for early retirement. It sounds bizarre to say it, but I am. I’ll be 55 in a few more years, and that means — in the high-tech industry — I’ll be “old”. And old enough to take a retirement package.

Does this make me happy? You better believe it. “Happy” is an understatement.

I mean, there are things I like about the job, but it’s just too demanding, and I’m not being properly compensated for what I give up, each and every day. I provide a sh*t-ton of value to my employer, and yet…

But in another couple of years, I can not only leave, but also potentially leave w/ a retirement package that’s a nice little golden parachute (emphasis on “little”) that can buy me some time and give me a buffer against any drop in income I might experience.

In the meantime, I’m working on a particular skillset that will allow me to either transition to a different kind of role, or allow me to consult. I’m downloading all my LinkedIn contacts, and I’m building a prospects list for people to reach out to in the future. There’s some danger that some of my contacts will “age out” of the industry (as some are older than I), and that I won’t have as many people familiar with my past work, who I can reach out to. But I have close to 1,000 contacts, most of whom are well familiar with my work. So, I’m pretty hopeful.

I just need to get everything set up ahead of time.

That means I need to:

  • Brush up on specific technical skills
  • Stay current with the part of the industry I’ll be working in
  • Figure out how much to charge for my services
  • Build up my portfolio of solutions I’ll be offering
  • Keep my image squeaky-clean and not do anything in public that will put me in a bad light
  • Update my wardrobe to be more professional and consultant-like
  • Build out my website in ways that put me in a really great light
  • And more…

I’m sure I’ll discover a lot more I need to do, as time goes on. But for now, this is a good starting list. I need to stay steady and systematic, and really pace myself.

I’ve tried to get my own thing going, many times in the past, but it never really worked. I think I just pushed too hard, too fast, and I wore myself out. I never factored in the effects of all those concussions. I had no idea they would even bother me. After all, in movies and cartoons, people were shown getting hit on the head all the time, and it never bothered them. So why should it bother me?

I just always pushed through — also, because I was using stress to numb my pain and confusion. The more confused I was, the more in pain I was, the harder I pushed. And it backfired on me, time and time again.

Well, this is my do-over. I get to do things differently this time, and I will. I have a healthy timeline ahead of me… enough time to get all my ducks in a row, set myself up to succeed, and get all the pieces in place for the future I want to have.

I’ve been helping to make a lot of other people rich for a long time, so why not at least give myself a fighting chance at independence?

It’s the least I can do for myself, after all these years.

Onward… at a common-sense, considerate pace.

Not so angry, tired, or frustrated anymore – Who I was then, versus how I am now

train in rear-view mirror
Looking behind can help me move forward

I had a very productive weekend. A lot of folks tell me to slow down and do less, and it’s important to keep balanced. The thing is, I actually am able to keep balanced while doing more. Because I know how to do things in a pretty efficient way.

Plus, I have a ton of experience that I can use — and I do.

Only I do it much, much better than ever before.

Once upon a time, I was constantly driven to go-go-go, to do-do-do. It was a heady, exciting way to live. But it wore me out. I got tired. And then I lost sight of what I was doing and why I was doing it.

Of course, I had no idea that my history of TBIs was driving me, or how it was affecting me when I got tired.

Now I know. And now I can manage my energy levels — lie down and take a nap when I need one… get up and get to work, if I have the energy… and really pay attention to the things that mean the most to me, all along the way.

I think I’m still as driven as I was before. Maybe I’m even more driven…

  • To heal
  • To help
  • To make a difference in the world
  • To be a positive influence, no matter where I am
  • To make dreams come true, for myself and others
  • To really, really help

Because more is possible than anyone seems to believe anymore.

Yeah, I know… the world is in a mess. Political turmoil. Drama. Threats of war — or outright war. Territorial disputes. Money, power, influence, control. Everybody’s churned up, worked up, and telling tales of doom and gloom.

And I used to get so bent out of shape about things like this. As though there were anything I could do about it. And it wore me out. It tired me out, it made me anxious and agitated, and that was no good.

I had no idea how fatigue affected me.

So, I couldn’t manage it.

Angry, tired, frustrated. I was always that way. If I wasn’t all three of them (which was often), I was at least one of them.

And that was no good. It just stopped me at every turn — the fatigue, the agitation, the distractions.

Meanwhile, I had no idea why nothing ever worked out for me, long-term.

I thought about this a lot, this past weekend, as I was systematically working through my list of errands. Things I had to do for others. Things I needed to do for myself. I thought about all the years I spent working towards my dreams, only to have them fizzle out. And then never understanding why that was.

Now I know why it was. I got tired. Fatigued. And then I got distracted and scattered and angry and defeated.

I’m not blinded to that, anymore.

Now I know.

Now I can manage.

I don’t have to settle for less, anymore. I can actually finish things I’ve started.

And this is a very good thing.

Onward.

Keeping the foundation solid

windrader foundationI’ve been doing better about taking care of myself, lately.

I guess I just got to a point where I realized that pushing myself constantly wasn’t paying off. I’ve always been driven. I’ve always been motivated. I’ve always wanted more and I’ve wanted to see what all I was capable of doing and being and becoming.

I’ve lost sight of the basics more times than I can count, but that gets old after a while.

So, I’m focusing on the basics. I’m keeping my routine going, getting my exercise every single morning — sometimes pushing myself a little harder, sometimes taking it a little easier — eating right, taking care of business as I go through my day(s).

The more I focus on the basics, the more I tend to my foundation, the stronger I am, the more stable I am. And it puts things in perspective.

It’s Friday. I got up early – couldn’t sleep, partly because of work excitement, partly because of being excited about the weekend. I’ve had a few hours of productive working on my projects. I solved a big problem that had stumped me for the past few days. I’ve had my breakfast. I’ve had my big glass of water. And I’m moving forward.

With my foundation in place.

Solid.

Stable.

Good.

It wasn’t always this way, of course. 13 years ago, my life was starting to fall apart. I’d gotten a nasty concussion about a year before, and I had no idea how it was affecting me. Things were just dissolving, and I didn’t understand just how much they were. All I knew was, life had gotten about 1000 times harder than it had ever been. All I knew was, I was stressed out more than ever, I was having so much trouble concentrating, I was emotionally volatile, my temper was all over the place, and life was increasingly impossible.

I nearly lost everything.

Nearly.

What turned it around was simple — focusing on basics. Developing a routine and using checklists to keep myself on track. Getting to know myself again and figuring out how to get through my day in one piece, without losing it over every little thing.

It was simple. But it wasn’t easy. It took constant work. It took sustained focus. It took years.

But it was worth it. And I found that taking care of the basics, being consistent (even boring) was the key to getting back… getting back to myself… getting back to my dreams… restoring my abilities that I’d thought were gone for good.

It was worth it.

And it continues to be.

Focus on the basics. Master the fundamentals. Keep working, keep refining, keep “iterating” from one improvement to the next… and stay steady. Don’t give up. Just be stubbornly committed to my goals and objectives.

And rest. Plenty of rest, good food, clean water. Restoration of my energy stores.

Keep on. I just keep on.

And it works.

Onward.

Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.

Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.

I honestly don’t understand why more emphasis isn’t placed on the experience of brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.

Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.

Here’s a quick summary of the different types of brain injury:

Acquired Brain Injury (ABI)

includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.

Concussion Resources: