Christmas and Change

tree covered in snow with forest in distanceI hope everyone who celebrated yesterday had a really great Christmas. For many of us, it’s a lonely time, if we can’t be with the ones we love — or the ones we love don’t love us back, or we’re just so misunderstood by the people we need to understand us the best.

I had a rough morning, with some upset that seemed to come out of nowhere. I just felt so terrible. But after I got moving, taking care of Christmas day things, I felt better. It helps if I get moving. If I “sit” in my misery, it just amplifies it.

So, it’s best to not sit in it. Have faith that my life is worthwhile, and just keep going. Get the focus off me, pay attention to others. Get moving. In a positive direction.

And the day turned out fine.  Between cooking and getting the house in order, there was a lot of activity. The good thing was, it completely wore me out, and I fell asleep on the couch for an hour before going to bed. I woke up at 2 a.m. drenched in sweat (even though I had the heat turned down), and I had to change my sheets, they were so wet. But then I fell back into bed and actually slept till 7 a.m., which is a recent record for me.

So, it’s all good. And since I don’t need to be at work for another week, I’m seeing all kinds of opportunity for the next 7 days. Opportunity to get my home in order, organize, clean up, take care of the chores that I typically put off, because I’m so tired at the end of every day.

I’ve already done a lot of organizing of my home office, which feels great. It’s more than just a holding pen for my files and books, now. It’s an actual work space, which I need. I also need to straighten up the living room, after the Christmas gift-opening extravaganza. Every year, my spouse and I get each other “more gifts than we need”, but in truth, this time of year is just about the only time of the year we splurge on luxuries like soft “house socks” with anti-slip nubs on the soles, new winter caps, and high-tech miniature flashlights. All of these things we can use, but they’re not necessities, so we usually go without. Until Christmas rolls around and we can justify getting them. We don’t get a lot of jewelry and luxury items, like cars and bikes and whatnot. Or maybe our definition of “luxury” is different.

Anyway, yesterday was a busy day, and it included some visits from the neighbors, who came bearing cookies. One of my neighbors needed extra driveway space for their visiting family, so they “borrowed” my driveway. And my other neighbor is moving in the spring, which is a shame, because they’ve been a great neighbor who’s really been there for us over the years. I often help them shovel out after snowstorms, and I watch their cat while they’re traveling. They keep an eye on our house while we’re out of town, and they just keep us connected with the rest of the world. That’s a loss. And when I think about it, I get a little emotional.

But change is constant. There we have it. And the time off work is giving me a chance to think through some of the changes that will probably be coming in the next few decades. Basically, I live in a house that is extremely non-accessible. It’s up on a hill that you have to walk up steps to get to. There’s literally no way to get in and out of the house without walking up stairs. And while that’s fine now, in 10 years or so, my spouse might not be able to do that.

So, what to do? Well, there’s a point of access through the garage. I do need to get a garage door opener installed for one of the garage doors. And the door from the garage to the basement will need to be widened. Then there are the basement stairs, which aren’t sturdy enough for one of those chair lift things. But I think an elevator will actually work. The stairwells are over top each other, which makes me think an elevator shaft will fit well in that space.

Of course, there’s the question of power. If the power goes out, we’ll both be stuck, since there won’t be stairs going to the top floor. So, maybe I  need to get one of those big-ass Tesla batteries that will power a whole house. And get solar panels on the roof.

All of this sounds really expensive. Almost to the point where it could be cheaper to tear down the existing house (which has a bunch of structural issues, including cracks in the garage floor, sagging floors, and some rafters that aren’t 100% good. The more I think about it, the more I’d like to just tear down this house and build another version that makes more sense. Or move to another house… Except that we love this location, we love the view, we love the little piece of land we’ve got, and we really want to stay.

Then again, it might make more sense to just convert the downstairs half-bath into a full bath and set up my spouse with their own bedroom downstairs… Not bother with the elevator, which will seriously alter the nature of the house (and affect resale prospects), and keep things simple. If we expand the deck and add on to the back of the house just a little bit, it could work. It could work really nicely.

I just have to come up with money to do all this, which puts the horizon for doing this in the far distance. But that gives me time to think it all through and come up with different options. It could work. I just have to sort it all out.

But I’m sure I will. It’s just fun to have the time to think about all this stuff and not be rushed by Things I Have To Do For Someone Else.

There’s not a huge amount of pressure to get everything done, right now, which is good. Because with me, these things take time to sort out. But eventually they get where they need to be.

And then I move on.

Change… yeah… change and Christmas.

Advertisements

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.

Pacing myself for Christmas

Christmas wrapping
The final push is on…

It’s Friday. I have the day off work. I still have to do some daily “housekeeping” tasks for work, but it’s not that big of a deal, because it doesn’t require that I pay attention at all. Just start a program at 6:30 a.m. and wait for it to finish a few hours later. I should probably fix it so that it kicks off by itself.

I’ll do that later today.

Yesterday was get-it-all-done-before-the-snow-flies day. We’re supposed to get a bunch of snow and rain today, which could get messy. It’s not the kind of weather you want to be driving in, so I won’t. My spouse and I spent yesterday afternoon and evening doing our last-minute shopping, and we got just about everything done. So, that’s good.

It wiped me out, but it was good. Now I just have a bunch of stuff to wrap. And that’s fine. Because I have three days to get that done — a big improvement over past years, when we couldn’t get ourselves in gear before the very last minute.

All that last-minute shopping of years gone by just boggles my mind. How did we do it? Chaotically and crabbily, as a matter of fact. And it pushed me to my limits, year after year. But Ye Olde attentional problems and executive function issues kept me/us from getting ahead of the game and preparing in a timely manner. We always needed the stress of last-minute pressure to put us over the finish line, and it took a toll, year after year.

Of course, that’s just how things were, so we never thought to do things differently. And it took a toll. Good grief, when I think about all the drama and yelling and frustration… and how my spouse and I just took that for granted… I’m glad things are different now.

Part of it is that we’ve both gotten older and more tired, so we don’t have the energy for all that whoop-de-doop. Who has the energy for squabbling? What does it accomplish, other than sharpening our sense of being “ON”?

Come to think of it, that was a huge draw for us. Getting all worked up over things was a great way to perk up the old tonic arousal and get the brain to think it’s awake. That “pump” from the drama literally made me feel like I was alive again… a better state of mind than the steady level of dullness that came after my concussion(s). So, getting all “drama’ed out” was a way for me to wake myself up and get myself feeling normal again.

That’s not a small thing. It’s a critical thing. It was central to my Sense-Of-Self, and while it did make me pretty tedious to deal with during the holidays, it nevertheless played a role in making me feel like myself again.

But eventually that got old. And I learned new ways to perk myself up. Like getting regular exercise, first thing in the morning. Like getting the crap food out of my system. Like finding things that really made me feel great and focusing on them… not the things that made me feel terrible and perked me up as a result.

It’s an ongoing process, of course, and I’m not perfect. I still have my moments. Heaven knows. But things are a heck of a lot better this year, than they’ve been in past years.

And this year really I’ll be ready for Christmas.

There’s a first time for everything.

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.

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.

When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

TBI Recovery – more work than you can ever imagine

5-Minute Read

shoestrings tied on a shoe
I always tied my shoestrings in a way I didn’t like – till last month

After nearly 50 years of tying my shoes in a way that makes the laces stick out in weird ways, I’ve finally started tying them in a way that makes them neatly lie flat across my shoes.

I’ve been bothered by my “askew” shoestrings for as long as I can remember. When I was a kid and first learned to tie them, I was happy I’d just figured out how to tie them. But the way they lay — all scrunched up and crooked — really bothered me.

I told my dad once, and he said I could tie them differently, by looping the shoelaces around in the opposite direction. At the time, it was too much for me to wrap my head around. It didn’t make sense to me. Plus, I’d only mastered the motion (and muscle memory) of tying them properly in the one way I knew how.

And I was afraid I’d lose the tenuous skill I’d already learned.

Years later — nearly 50 years, to be more accurate — I’ve finally decided to tie them in the way that makes the loops lie flat across my shoes. They’re less likely to trip me up, that way. And I like how they feel better than the old way.

I’ve been doing this regularly, for the past couple of weeks — making the concerted effort to tie them in the way that makes them neat and tidy.

But you know what? I keep going back to the old ways. Back to the old habit of tying them in a way that’s really second-nature to me, after doing it that exact way for all these years.

And that’s taught me, yet again, about how and why TBI / concussion can be so difficult to recover from. The “wiring” that you’ve trained to use in a certain way — habits of thought and action, movements of your body, ways you think about things, routines of sleeping and waking — may have changed in ways you cannot see, but it’s all switched around, so you have to find new ways of doing things that you’re used to doing in one certain way… since forever.

And no matter how well you train yourself to do things the new way, no matter how much conditioning you have, no matter how well you like the new way, no matter how badly the old way has been disrupted, your brain and your body are still going to try to do things the old ways, the ways that they think they still know how to do.

They don’t, of course… or maybe they need to be intensely retrained. But they don’t realize it. And that’s one of the hallmarks of TBI: not knowing what’s messed up, until it’s too late (and then, sometimes not even realizing it yourself).

No matter how convinced I am of the new way of tying my shoelaces… no matter how much I may like the new way of doing things… no matter how much I used to hate the old way of doing things… that’s what my brain and body and muscle memory are used to. It’s what they feel comfortable doing. Even if it doesn’t work.

So, I have to keep after it. Like all of us who are dealing with somewhat broken brains / disrupted wiring. Our systems will go for the way that they think is easiest and what’s most familiar. They just don’t know it won’t work out.

And that’s what we have to keep learning and relearning and readjusting to, over and over again. No matter how long ago the injury happened.

It takes a ton more work and effort and attention and focus and determination to recover — even from a “mild” traumatic brain injury. That’s what most people don’t understand… but every long-term survivor knows, all too well.

Be that as it may… Onward…

Nearly there – on the eve of Christmas

Christmas wrapping
The final push is on…

I’m supposed to be shopping, right now. I intended to get up early and head out to a local department store to pick up the last of the gifts I’m giving. Then I was coming back to deal with one of the cars having a nearly-flat tire. Then I was going to run some last-minute errands, followed by a nap, followed by gift wrapping, followed by making the Christmas turkey, followed by preparing the trimmings, followed by more gift wrapping… and then finally supper.

It sounds like a lot, only because I have it all broken into different pieces. But breaking things up into different pieces and then scheduling each one in its own time slot actually makes it much easier to take care of everything.

Because it’s all got to get done. It’s not like it’s optional. The gifts need to get wrapped, and the food needs to get cooked. The car needs to have sufficient air in the tires, and I have to have my nap. It will all get done… so long as I keep my cool.

Yesterday, I talked about how I need to keep my cool around my spouse when tensions get high. And it’s true. As much because of their cognitive issues, as mine. Last night, I was feeling really rushed, and I was having a lot of trouble keeping my thoughts straight. I have not been good about keeping on my sleeping schedule. My spouse has been especially needy/demanding, this year, and they have also been having more trouble thinking things through, which makes them more emotional and more volatile.

So, to calm them down, I have been staying up later in the evening, watching television, and adapting more to their schedule, as well as their eating habits (I’ve been eating a lot more bread than I should, which is messing me up, because my body can’t handle the gluten/wheat as well as it used to). It’s great for them, but it’s terrible for me. And it wears on me, after a while.

I was feeling really pressured, and I said something that my spouse took the wrong way. They took a lot of things the wrong way, yesterday, for some reason. They’re feeling depressed and isolated and not that great, physically, so that’s an added stresser for them. And they take things the wrong way, getting all riled about things I say and do, which I’m trying really hard to not do wrong.

So, painful awkwardness ensued, and it took most of the evening for things to even out again.

Man, oh man, I cannot wait for Christmas to just be over.

Well, anyway… I’ve got a week and a half of time off ahead of me (oh, except for a few hours I need to work, next week, to balance out my vacation/work schedule). And I need to be especially protective of myself, my time, and my energy, while I’m home. We have a number of scheduled activities we have to go to — doctors and social gatherings and errands to be run — so I need to keep balanced, and keep my system in good shape.

That means exercising as usual, each morning. That means being smarter about what I eat and drink (making sure I drink enough water). That means being firm about the times when I got to sleep, and not being pressured to shift my schedule later, just because I’ve had a nap.

I felt sick all during the Thanksgiving holiday, because I wasn’t keeping on my sleeping schedule. And I don’t want to do that all over again. I’m feeling a little sick, right now, actually. I just have to get everything done. And then do it.

Could be, I have to call AAA to add air to that tire, since it might not be safe to drive on it. But I can easily do that while I’m taking care of everything else at home. I just call them, and they come. Or I may need to change the tire, period. Either way… as soon as I get back from my department store trip, I’ll have the rest of the day to sort everything out. So, onward and upward. I can do this.

I just need to be diligent about it, act like the adult I am, and keep my eyes on the prize — a wonderful week off, when I get to relax and actually do some of the things I never get to do, otherwise, while I have more than one hour of uninterrupted time to focus and concentrate.

Luxury. Pure luxury.

Okay, enough mooning about this. Time to get a move on and get this show on the road. I’m nearly there… I’m nearly there…