Looking back, looking ahead… and trying to get some sleep in the meantime

rowboat at docks

I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.

It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.

It’s an ongoing problem, especially during this vacation.

Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing  better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.

Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.

Cities I didn’t know existed before.

Distant piers and jetties that look every bit as interesting as what I’ve known before.

Busy industrial ports that hold mysteries within their iron fortresses

And secluded beaches to explore.

Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.

And lighthouses to guide me along the way.

Lights… sights… sounds… And a whole world of choices out there.

When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.

But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.

I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.

That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.

I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.

If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.

You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.

The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.

Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.

I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.

But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.

So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.

So, I won’t think about them. I’ll focus on the good.

And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.

Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.

So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.

And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…

Onward.

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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.

My last decent vacation in a good long time…

open book with a landscape scene in the pages
The way life goes, you never know how things will shape up. I’ve had so many hopes and dreams over the years, and so many times, I’ve been on the verge of really breaking through… then something happened. And that “something” was often a TBI.

I was just getting my act together in elementary school, finding my footing with my peers and getting involved in a special program for “gifted” kids and discovering what worked for me, when I got hit on the head and things changed. I became combative. Difficult. A behavior problem. So much for the gifted program. They showed me to the door on that one.

My family relocated, and I was finally figuring out how to interact with the people around me (who all talked with thick accents I could barely understand). Then I fell out of a tree and wrenched my neck. And I kept hitting my head while playing sports. Football. Soccer. Just playing outside. Hitting my head was routine. I can remember a number of really significant blows to my skull that disrupted my consciousness, but they happened against a backdrop of regular clunks on the head. It seemed like every time I got on my feet and started feeling like I had a grip on my life, I’d get hurt (again), and I’d be back at square one.

I eventually got out of my parents’ house and got on with my life. When I drank a lot, I fell down — a lot. I may have (probably) hit my head a bunch of times, but I don’t remember much from the 4-5 years after I left my parents’ home.  Those years that could have been some of my best (and in some ways, they were). They could have been years of exploration and learning and experience like no other, but instead they were mired in the muck of hangovers and all the confusion that comes from not knowing what happened the night before. A few scrapes with the law… being ostracized by my peers… some violent confrontations… making money by borderline means, just to get by… it was definitely an experience — that’s for sure. But it took me years to recover from the damage I did to myself.

After I was in the working world, driving to work each day, I got in a bunch of car accidents. They weren’t huge deals, mostly just fender-benders, but whiplash and getting clunked on the head didn’t help matters any. During years when most of my peers were getting on their feet, finding their way in the world, I was scrambling. Trying to catch up, after being set back. I got a job, then got hit by a speeding door-to-door salesman. I left that job without saying why. Just left one day and never went back. I relocated to a really great city, but just before moving, I got rear-ended and spent the next several months in a manic haze.

Years later, I had a pretty decent job with a lot of responsibility, then got tangled up in a 7-car pileup, and everything fell to pieces there, too. That worked out okay in the end, because I found a much better job and a completely different career track, but it did a number on my self-confidence, and it caused me to pass up a golden opportunity that my new manager laid at my feet (and begged me to take). I can only imagine how much more stable my life would be now, had I actually taken them up on it.

The last and most debilitating TBI was when I fell down a flight of stairs at the end of 2004. I was just 18 months away from having some investments mature, and if I’d been able to hang in there and keep up with my life, I could have repaired and paid off my house, gotten rid of my debt, and really solved a lot of logistical problems that are the kinds of things that only money will solve. None of that got solved. It all fell apart. And it’s taken me 12+ years go piece it all back together to just a semblance of how things once were.

So, what does this have to do with my current vacation (which is now drawing to a close)?

In the course of my life, I’ve never known just when everything would fall to sh*t. It’s partly me being oblivious, partly me not having a reliable crystal ball that lets me peer into the future. So, all those times when I just assumed I’d have time to do this, that, or the other thing… all those times when I thought I was set… all those times when I didn’t pay attention to what was Right In Front Of Me… in so many cases, they were the last hurrah for that part of my life. The last shred of self-confidence. The last vestiges of feeling competent. The last months of feeling like I could actually plan my future with certainty. The last weeks of being able to take certain things (like how my brain worked or how I’d react to experiences) for granted.

I didn’t savor those things when they happened, because I was too damn’ optimistic. Too oblivious to just how sh*tty life could get for me. Not experienced enough to realize that things could get That Much Harder for me in a moment’s time. I took them for granted. I didn’t wring every last bit of goodness out of them, while the goodness lasted. And now I just look back on a lot of wasted opportunities and chances I totally missed enjoying… all because I thought there would be another time that would be somehow better.

I don’t believe that anymore.

Especially not this morning.

From here on out, my vacations will probably be a lot more work than relaxation, a lot more frustrating than renewing, and a lot less worth it to me. But they’ll continue. Life goes on. Sh*t gets complicated. So it goes.

For today, I’m just going to enjoy myself. Because this might just be as good as it ever gets.

I have the next week OFF

beach with ocean and "relax" drawn in the sand
Soon…

I’m leaving for a week’s vacation today. I have a handful of errands to run before we can get on the road, and then we are heading out to a waterfront town that’s full of art galleries and novelties shops and all sorts of great restaurants. We have a few restaurants that we really like, but mostly we avoid the crowds and excitement, buy Mexican or Chinese takeout and head for the beach for our own waterfront dining. It’s the best way — sitting in the car right at the edge of the water, having a nice filling meal that doesn’t cost a million bucks.

It’s going to be nice to get away. It’ll give me time to think, time to relax. I realize that I’ve been stuck in limbo with my life for some time. There’s been all kinds of drama in my immediate and extended family for the past 15 years — actually, longer than that. More like 40 years. And it’s really dragged me down, watching everyone go through their problems — me included.

But now, here I am, at a place in my life where I just don’t feel like I have the time to fritter away on feeling terrible about things that I can just take care of. I’ve learned a whole lot about how to deal with my TBI issues, and I’ve made an amazing recovery. So why not enjoy it?

Why not, indeed? I feel like I’m at a point in my life where I’ve learned more than enough hard lessons, I’ve been through my make-or-break circumstances, and I’ve made it through. I’ve paid my dues. Now it’s time to just enjoy my membership.

It’s funny… I don’t tend to think of myself as that old. I’m really not. But I have been knockin’ around on this planet for over half a century, and I’m kind of over the whole newbie experience. I’m not a newbie. I’ve been around the block plenty of times. And it’s about time I just settled into living my life and enjoying it, instead of constantly pushing myself to “take it to the next level”.

Please. What next level? No matter how hard I work, no matter how hard I push, there will always be another level ahead of me. So, why not just settle in and get the most out of the levels I reach? I haven’t done nearly enough of that over the years. And while it does keep me sharp and invested in my life, it’s also depleting and drags me down.

Eh, whatever. I’m going on vacation. I’ll probably blog a bit while I’m there. Just relax into it, do some writing, have a good time, while I’m at it.

And now… it’s time for more errands, as I prep for my 7-day escape.

Onward.!

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

When things don’t turn out… as expected

sunset and clouds reflected in waterI can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

road leading into the distance, with country landscape surrounding it
The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

  • My short-term working memory was shot.
  • I couldn’t understand what people were saying to me.
  • My ability to plan and follow through was negligible.
  • My temper was short, and the recovery time was long.
  • My spouse was afraid of me.
  • I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Once you find something more

… more than your personal pain, more than your own problems, more than your difficulties and drawbacks and struggles… everything changes. Once you find something that is bigger than yourself, that means more than any problems you might have, that lasts longer than the next 24 hours… 24 days… 24 months… 24 years… Once you find something that lights you up and brings you out of your shell, a whole lot of… well, nothing-ness… can be put to rest.

See, the thing is – when we are so caught up in what is wrong with us, it takes our attention off the things that are right with us… the ways that we can help others who have their own issues which may be all but impossible for them to handle. When we are so caught up in managing our own issues, in dealing with our own pains, we don’t have the energy and the time to look around and see what else is there for us to do with ourselves. We spend so much time consumed with ourselves, that everything else fades into the background.

And our lives become that much smaller, that much darker, that much less live-ly.

I only say this, because I myself have fallen deep into this quagmire, and I have been stuck there for many, many years. I spent so much time in my childhood and my young adulthood, and then in my adult years, working hard to manage my issues and deal with life around me. I didn’t understand what was happening to me, I didn’t understand the nature of my issues, and everyone around me had their own problems that were keeping them from helping me see what was going on with me.

If anything, they were still dealing with their own problems they first encountered as children, and never fully managed to resolve or escape. I’m sure they were very bit like me, when they were young — needing help but never getting it, because the adults who could help them were too caught up in their own pain and problems to see beyond and see what was in front of them.

And so the cycle continued.

And so it continues to this day — and probably will, well into the future.

The thing of it is, it’s not really necessary to ONLY have this happen, generation after generation. I don’t imagine for a moment that we’re going to help everyone to resolve their issues overnight and usher in a new world of love and light and bliss by this time next year. I’m not saying it’s not eventually possible, but these things take time. And in the meantime, we need to take these little steps to help the situation — not only helping ourselves to get past what is dragging us down, but helping others to see that there might be something else possible that they could experience, besides the hurt and the pain and the anger and the fear.

I don’t want to get all “airy” here — what I’m talking about is actually really practical, really commonplace, and really everyday. It’s just this basic fact that things are hard all ’round, but we can make them a little easier by getting over ourselves. I do believe it’s important to take care of yourself, but sometimes “looking out for number one” gets us — and everyone around us — in trouble. Especially when the pains and the hurts we’re trying to make up for are actually invented in our own minds.

Take for example someone who lives their life around being rewarded for enduring difficulties in life. I know lots of people like this, and at times I count myself as one of them, so it’s an easy example for me to use. Say someone grew up in a family that had a lot of problems — for one reason or another, life was chaos. Growing up, there was a lot of pain and frustration, and certain habits got “grooved” into everyone’s thinking and behavior. Even after growing up, those old habits still stayed in place, because … well, you never know what might happen, and something really awful could come ’round the corner any minute. This person spends their adult life on edge, always looking for that THREAT that may or may not come, and by the end of each day, they feel completely exhausted — depleted by their constant need to be on alert.

Is their life really, truly dangerous? Maybe. Or maybe not. Perhaps they live in a very safe area, they have a good job, and all their needs are met — so much so, that they have a constant supply of luxury items available to them anytime, for the having. Still, because their mind is trained to look for danger, and they are accustomed to being on guard, they end each day in Paradise convinced that they’ve barely survived Real And Present Danger, so therefore, they should be rewarded.

Or at the end of each day, they are so exhausted by their hyper-vigilance, that they attack everyone around them for pulling on them and draining them and keeping them from relaxing after what seemed like an impossible day.

This is one example of how it can go… how we can lose ourselves in our old pain and suffering, because we’re in the habit of focusing on it, and we don’t realize we don’t have to do that anymore. Now, granted, sometimes the pain and suffering is very, very real. What I have gone through in my past, thanks to TBI, was not imaginary. I didn’t make it all up. It was difficult, almost impossible, and it did a lot of damage to me before I realized what was going on. At some point, though, I had to be willing and able to let go of the iron grip I had on my life, on my difficulties, on my challenges. I had to be willing and able to entertain the possibility that A) my own struggles were subsiding but my focus on them was making them worse than they had to be, and B) others were struggling even more than I — with far more serious issues — and for far more genuine reasons.

It took me some time to get to that point, and there were a lot of fits and stops along the way. I can’t say it even sank in for quite some time. But once it did… well, that was interesting. When this started to hit home to me, I felt lost, disconnected… as though I was losing a part of myself. I was, too — I was losing the part of myself that had hardened around my injuries like tough scar tissue that was holding me back from being able to completely move. My injuries were part of my past, they were part of who I was. And if I let them go, who would I be?

Who indeed?

Well, I struggled alone with that for quite some time, until it occurred to me that my injuries weren’t only about me. I’ve always been aware that others struggle with these same types of issues, and that reaching out to others to let them know they are not alone is an important part of my life’s work. Yet part of me has really clung to the idea that my life has been defined by injuries, that it’s held me back, that it’s cost me so much — me, me, me. All about me. Because, well, if it’s not about me, then won’t I disappear?

Yes and no. I now feel that letting go of the “me” that is defined by injury, is the one way I can actually make some sense of what I’ve experienced. It’s ironic — the very thing I hang onto is the thing I need to let go of. At the same time, once I let go of that “me”, I’m free to become something else – someone else – someone who knows what it’s like to really battle these issues, and who still has to work with them, day to day, but who isn’t going to be held back by them, and is going to use their experience to help others, in hopes that they themselves may find freedom one day.

I’m a big believer in freedom. I’m also a big believer in responsibility. And oddly, the very thing that seems to take all the “fun” out of freedom — responsibility — is the thing that makes it even more free.

Because there is something more out there, than the pains we suffer and the injuries we endure. We all — each and every one of us walking around on planet earth — has our own share of pain and suffering. You can’t live on this earth without at least some of that. What we choose to do with it… that’s up to us.

And once you find something more to put your attention on, that isn’t all about your own hurts, your own pains, your own dramas… well, you’d never believe what else is possible in your life.

 

The hurt of the hidden wound

Got a tip about this article today. Good reading – check it out.

It was July 4, 2009 when Lieutenant Colonel Stewart Hill had his independence taken away from him. But he doesn’t remember much of what happened on that hot, dusty Saturday, and has no recollection at all of the moment the lights went out on his former life for ever.

His last memory was of a Chinook helicopter rising from a ploughed Afghan field. It carried the lifeless body of 18-year-old Private Robert Laws and other injured men of the Light Dragoons and 2 Mercian, victims of an attack with rocket-propelled grenades by the Taliban. After that, the gaps have to be filled in by others.

Read the rest here >>

I finished reading a book

Here’s a blast from the past. About a year ago, I wrote this post (but forgot to publish it), absolutely giddy about having finished reading a book. Looking at where I’m at now, it’s pretty amazing the changes I’ve been through. After not having been able to get through an entire book in years (although one of my favorite pastimes was always reading), last November, I actually finished reading a book.

Here’s the post:

November, 2009

Yesterday afternoon at about 3:30 p.m., I finished reading Aging with Grace, the book about the Nun Study of those long-lived School Sisters of Notre Dame, which explores how and why some people live long and never succumb to Alzheimer’s or dementia, and why others may be more vulnerable. This book has a lot of meaning to me, because as a multiple TBI survivor, I’m statistically more vulnerable to dementia, and about the last thing I want, is to be incapacitated and demented later in life. No thanks…

I found a number of tips and clues about what you can do to avoid dementia — even if you do have some brain degeneration — and I read reports of nuns who had all the signs of advanced Alzheimer’s, but no symptoms whatsoever before they died. Sounds good to me.

I’m invigorated by this new information. I highly recommend it to anyone. And I’m even more invigorated by the fact that I actually finished the book! It took me a month to read all 219 pages, but I did it!!!

This would not be big news for most people I know. Most people I know read books as a matter of course, and when they start a book, they generally finish it (unless it’s truly awful and/or they run out of time). I, on the other hand, have not finished reading a book I started in a number of years. It’s hard for me to remember the last time I actually reached the last page of a book I started.

Let me walk around my study, looking for a book I know I’ve read cover to cover… Let’s see… I am reasonably certain I’ve read about 56 of the books in my study, which constitute maybe 10% of the total on my bookshelves. And the  most recent one I finished prior to Aging with Grace was consumed in a hurry back in 2006. I may have read something from cover to cover in 2007, but I cannot recall.

Now, mind you, I have tons of books, but most of them I’ve only read the first couple of chapters, if that. It’s a lifelong habit that goes way back to when I was a kid, and I never even really realized it was a problem, until this past year or so, when I started to take a long, hard look at my reading habits — or lack thereof — in the context of my TBIs.

It’s a complicated issue — part difficulty with the material, part difficulty with keeping focused on the material. I can be really distractable, so I often end up wandering off on cognitive tangents, when I’m reading. But part of what feeds my distractability, I think, is the fatigue that sets in after I’ve been reading for a while, as well as the discouragement I feel when I realize my eyes have been skimming pages for the last half hour, and I cannot remember what I just read. It’s complicated. And it sucks. And it never occurred to me before that I might have difficulty reading. I’m such an avid infovore — I’m usually reading something. Who would guess that reading is such a challenge for me?

It’s taken some adjusting to get used to this fact. And the adjustment has been as much of a hit to my self-image as anything else. I was always known as a bookworm. Much of my knowledge comes from books. If I’ve been reading at substandard level all these years without knowing it… and also not grasping a lot of what I was reading… what does that say about me, as a person? Does it completely invalidate many of the beliefs and assertions I’ve had about myself, for over 4 decades? It’s troubling to think so.

But now that I know reading is a problem for me, I can take steps to do something about it.  And that’s good. I literally cannot live this way, not being able to read a book from cover to cover. I am NOT going to continue in life this way. Something must be done. I need a plan. Here’s my plan — which so far has worked well, the first time through.

I need to acclimate myself to reading for longer periods of time, by reading for fun and pleasure, getting up to speed with that, and then starting to read for learning and understanding. I need to practice regularly and build up my stamina, and also develop different strategies for how to handle the material I absorb.

First, for the fun reading, I need to identify a topic that interests me which will stimulate me. I need to have some investment in the material, some payoff, some reward that comes with it. Preferably, I need to find something to read that also has “companion” material, like a movie that was made of it. I need to have the information presented in different formats, that different parts of my brain can “hook into”.

I chose The Bourne Identity, because it’s an action adventure novel that’s broken into relatively short chapters. It’s also got a movie made of it that is one of my favorites, and I have visuals of the action to prompt me as I read along

Second, I need to set aside time to read. I have to have time to do it, when I have time to rest either before or afterwards, or both.

I do this on the weekends. I take naps on the weekends to catch up with my rest. And I read during the afternoons.

Third, I need to gradually increase the amount of time I spend reading. I pay attention to how much time I’m spending, how I’m feeling, how my pace is. And I really congratulate myself, when I’ve read more than 10 pages at a sitting and understood what was being said the whole way through.

I can do this, but I also need to make sure I’m not tiring myself out. I need to make special efforts to reward and praise myself for having read as long as I have. I tend to get down on myself and think I’m stupid, when I’m not reading well, and I assume that it should be easy for me. But my reading has never been as strong as I always thought, and since my fall in 2004, it’s got even worse.

Fourth, I will then transfer my stamina and interest and good experiences with action/adventure fiction to my other non-fiction reading. And I must pace myself, gradually working my way up, again, and re-reading the things that I didn’t get the first time around. I need to keep an action/adventure book on hand, to keep my interest bolstered. I don’t worry so much about finishing the fiction in a timely manner. It’s more for the sake of keeping my spirits up and having a good experience while reading, so I can focus my more intent energies on the non-fiction/professional reading.

This is what I’ve been doing, on and off, with Aging With Grace over the past month. And now that I’ve done it and see that it works(!) I am ready to move on to my professional reading.

This is such important work. My survival and success depends on it. I’ve got a bunch of books I bought in the past that I need to read for work, but I haven’t been able to crack them. Now, I’ve got to do it.  Now I have a strategy and a plan, and I’ve proved (at least once) that it works. Reading really is fundamental. And the fact that I have done it with Aging With Grace has really lit a fire under me.

But before I go any further, it’s time for my Sunday afternoon nap.