And now winter has arrived

snow covered buildings
It’s not this bad, but this is how it feels.

It’s snowing again. It snowed a lot, the other day, and now it’s snowing again. I’ve been mainly moving snow with my shovel, this winter, pushing it aside, instead of using my snowblower. I need the exercise. I was turning into a lump. But today (or maybe tomorrow) I’ll use my snowblower instead. Winter’s got the upper hand today.

Whatever I do, I need to be smart about my choices. And that means using the resources I have – to save my back. Earlier today, I got out the snowblower, made sure it starts, filled up the gas can, and prepped myself mentally for a big day of snowblowing tomorrow. I might even do some tonight, before it gets completely pitch black. I need to move snow. And I need to use my noggin about it.

My back, shoulders, arms, and legs are all pretty sore. It’s good for me. I need the heavy exercise. It’s the one thing that actually helps me get rid of excess energy.  If I don’t do heavy exercise on a regular basis, I can become irritable – and that’s no fun for anyone.

So, this winter, I’ve been shoveling. And it’s been great.

This storm, however, seems to have other ideas. So, I’m being smart and not pushing my luck.

And that’s progress for me, because once upon a time, I would push it. I would test my luck and keep pushing myself to go-go-go, even if I was tired, even if I was getting uncoordinated. I would wear myself out and then either be at risk of falling, or I would actually fall.

I almost fell, the other day, when I was clearing my drive. Black ice underneath silky, slippery snow. It was treacherous. I was careful. I didn’t push it. And I’m glad I didn’t.

I really do love winter, I have to say. The cold wakes me up, it makes me feel alive, and the snow is great to move. I love “playing” in the snow, shoveling it and moving it around. It’s just the ticket to get me out of the house and out of my head.

Just. Fantastic.

Today, though, I’m pretty much laying low… recuperating and letting my body rest. I’ll get plenty of exercise tomorrow, I’m sure.

Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

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…

Concussion symptoms got you down, this holiday season?

head form of metal meshYou’re not alone.

The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.

As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.

You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.

The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!

Some of my own challenges have been:

  • Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
  • Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
  • Keeping cool with my spouse, when tensions get high.
  • Staying on my exercise routine.
  • Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
  • Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
  • Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.

Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.

Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.

And start the year fresh.

Onward.

Finally getting into the holidays

christmas tree
It’s a modest Christmas, this year

This holiday season has been quite different from past years. Both of us were too sick to travel for Thanksgiving, so we stayed home and ate turkey in the peace and quiet of our own company. It was nice. No yelling, no screaming, no wild flurries of activity and trying like crazy to catch up with family members we haven’t seen in a few years.

There really wasn’t enough time to do everything — and my side of the family has a bad habit of trying to cram everything into a few days, which is exhausting and disorienting and sets us both up for a whole world of hurt, when we travel on to the rest of the family.

We were also a lot shorter on energy, this year, than we’ve been in the past. My spouse’s mobility issues — severe pain and limited range of motion — make it next to impossible to get around easily, and the impatience of others doesn’t help. It’s not a total disability, but it’s a significant limitation, which others cannot seem to understand. My spouse looks and acts perfectly normal when sitting down and chatting, or talking on the phone. They’re not obviously cognitively impaired. So, somehow that gets into people’s minds that they’re really not that bad off.

And that’s a problem, in itself. Because then people expect unrealistic things of you, and they don’t treat you very well, when you just can’t keep up with the frenetic pace.

Anyway, that’s only half of the problems we avoided by staying home and keeping to ourselves, this year. The other half, is my anger, fatigue, frustration, and bad behavior issues, which have been flaring up, now and then. I seem to have a shorter fuse, this year, than in the past. I think it’s really due to my work situation, which is mighty “dynamic”, these days. There are layoffs pending in the not-so-distant future. And while I feel pretty confident about my own situation — not only am I getting along with my new colleagues better than just about anybody I know, but I’m also feeling really strong about my professional prospects.

I’ve come such a long way, in the past 10 years. It’s pretty amazing. 10 years ago, I was pretty much of a train wreck — spending money left and right, completely out of control with my behavior, my anger, my self-management.

And I had no idea why it was — or that it had anything to do with TBI.

Now I know better. And now I’m doing better.

It’s just other people’s “stuff” I need to deal with. There are a lot of worried, anxious people, and that makes them difficult to handle.

But for myself, my prospects are looking good, so I’m not worrying about it. Main thing, is taking care of myself, doing the best I can, and not letting the world around me bring me down.

So, I’m finally getting into the holidays. Dealing with them as they come… and getting my shopping and decorating done, a little bit at a time. It’s taking a few weeks longer, than in past years, but I’m not worrying about it. At least it’s happening. And the way I’m doing it all — measured and gradual and not stressing about it — really makes sense for where I and my spouse are at, right now. This time is one for me to be reflective and slow down, not get caught up in everybody else’s dramas. They can go on without me. I’m fine where I am.

“Nobody explained my brain injury to me”

lightning striking inside a headJust by total chance, a week or so ago, I found myself talking to someone who had a stroke in 2007. Unless they’d mentioned it, I never would have noticed. They’d had four months of recovery, then they got back into their life. And while we didn’t talk that long about it, I got the impression that they hadn’t gotten any help with really understanding their situation after their stroke.

When they ran into their neurologist at the hospital, a few months later, they got a tip about how certain things they were doing were just not very helpful at all. Things like beating themselves up, because they weren’t doing a good job at something… things like getting angry and upset about stuff going wrong in ways that were directly related to their stroke… The neurologist gave them some insight into what was happening with them, and a better way to deal with it.

It was good that they chanced upon their neuro. It’s just too bad they didn’t get that insight sooner, so they could relieve some of their suffering — maybe even prevent it.

But they were amazed that I’d been able to find help with my own brain injury. They asked a number of questions about how I recovered, how I got myself back, how I retrained myself in certain ways. They seemed downright amazed, that my path for the last 8 years had even happened.

And it left me both happy and grateful that I found this path… and sad and frustrated that they hadn’t — that thousands upon thousands… maybe even millions upon millions of people hadn’t.

Here’s the thing that gets me about brain injury recovery — there is so much that’s known, there are so many tips and resources and a wealth of information available about what happens to the personality when the brain is injured. But there doesn’t seem to be any uniform or standard way of communicating that to people. And so, we suffer. We really, really suffer. And it’s not just the brain-injured folks who suffer — everyone around us, especially our loved ones and those who are a regular part of our lives, joins us on the big proverbial float in our Pain Parade.

It’s actually pretty bizarre, if you think about it. TBI happens 1.7 million times a year in this country, alone.  Actually, according to the CDC,

In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States.

So, the 1.7 million number (which has been used for years, now) actually looks low. Add to that the numbers for stroke (nearly 800,000 Americans have a stroke each year, and 130,000 of them die from it), and other kinds of acquired brain injury (anoxic, for example, from losing oxygen to your brain), and you’ve got in the neighborhood of 3+ million Americans who have experienced a brain injury.

That’s just in this country. And that’s not counting all their family members, co-workers, community, and extended social connections.

Brain injury is a thing. It’s a big thing. And yet, somehow, we can’t figure out to tell people who’ve just had a brain injury, what’s happened to them, what they might experience as a result, and how they can take steps to recover?

This makes no sense.

And it makes me angry. Because a lot of people are suffering needlessly. Really, really needlessly. Just having the most basic information about brain injury helps so much. Finding out what happens during concussion or stroke — and then things to NOT DO (which medical professionals know about)… as well as WHAT TO DO — many of those things are simple and straightforward, and they all help a person make sense of their situation and chart a path forward.

Maybe it’s professional caution. Doctors don’t always know what to expect, and in any case, every brain injury is different, so every type of recovery is going to be a little different. Or maybe it’s lack of time. Or maybe it’s because doctors delegate education and training to rehab and therapy folks, who presumedly have a more extended working relationship with brain injury survivors. Maybe they want to limit their liability, in case their promises don’t come true.

Regardless of why that is, the fact remains, there’s a huge, gaping hole in the support of brain injury survivors — TBI, stroke, ABI, you name it — that seems only to be filled by people in the business of doing so. And from where I’m sitting, that’s a huge problem, because the profit motive becomes the most important thing. First and foremost, if you have to make money to survive, you’re going to focus on making money. And then you end up making a lot of choices that you wouldn’t necessary make (or have to make) otherwise.

So, the care you provide is necessarily compromised.

And the slippery slide begins… and continues.

Where does that leave the survivors? Or the people around them who struggle to understand what’s happening? Where does that leave the wider community who has lost the full participation of someone who is important to others, in large or small ways?

It leaves us nowhere. In no-mans-land. In limbo. Uncertain. Without a clue. And eventually, without hope.

A lot of lives are irreparably trashed, because of lack of support — even the most basic explanation of what’s happening… simply because someone couldn’t figure out how to explain a brain injury to the survivor, as well as to their immediate circle of family and friends.

How ironic, that advertisers can figure out how to explain and sell the most inane crap to just about anybody with a pulse, but nobody can figure out how to explain something as important as the logistics of brain injury to the people who desperately need to  know.

What a waste. What an incredible waste.

And I remembered that 6-digit PIN code

binary code - lines of 0s and 1s
Slowly but surely, my ability to remember digits has returned

I just had to reset my Twitter account. I forgot my password, and I did that thing where you have them text you a 6-digit pin so you can reset your password.

I got the text on my phone, which was in another room, charging. And just to see if I could do it, I looked at the 6 digits and tried to commit them to memory. Then I walked in the room where my computer is, and I was able to put in the digits with no problem. 880-765. Just so.

Woot! That is so amazing. It might not seem like much, but seriously, this is a big deal for me. Not only does it mean I don’t have to be slowed down by having to write down (relatively) short strings of digits, but it also restores a part of myself that I was always really proud of — being able to remember strings of numbers.

I can also remember the 16-digit number of the credit card I use most frequently (no, I won’t be sharing it here). I can remember the security code, as well as the expiration date. The numbers all have a recognizable pattern to them — certain repetitions of sequences of numbers that I only recently recognized. Years ago, I would have noticed those sequences and repetitions of patterns right away, but I’ve been using this credit card for quite some time, and it only recently occurred to me that I was looking at a string of numbers that’s actually pretty easy to remember.  So, that’s huge progress for me — not only the remembering, but also being able to see the bigger picture of the overall pattern of the entire number.

Back in the day, just a few years ago, I would have been unable to remember 6 digits in a row. I couldn’t even remember 4 digits. Anything more than 2 or 3 was a stretch for me. It was a big loss for me. Even though it seems like a little thing, not being able to remember more than 2 or 3 numbers — in today’s PIN-driven world — puts a big crimp in your ability to just live your life. It’s a problem. Everywhere.

For work, when I login remotely, I have to put a PIN into the login screen, and that used to not be a problem. Once upon a time, I could glance at an 8-digit PIN and punch it into the computer with no problems. Then I hit my head in 2004, and that stopped working. It was a real problem, because I was working on highly secure systems, and a PIN was required every time I logged on in the morning. I used to get so flustered about not being able to remember the digits, but needing to write them down and then punch them in, one at a time. I also had to really take my time, because I would literally forget what numbers I’d just put in, 2 digits ago.  I got so upset. I used to be able to remember 8+ digits at a time. But that went away when I fell in 2004.

I’m still working on remembering my digits. I’m still working on my memory, period. And my progress has been “uneven” to say the least. Every now and then, though, I get a clear view of how I’m improving. And it’s not just some flash-in-the-pan exception, but something I can do over and over.

Like remembering my credit card number – all 16 digits, along with security code and expiration date.

Like remembering a unique 6-digit PIN that I’ve never seen before.

Like remembering to do things (and buy things at the store) that I would normally completely forget.

It’s a process, to be sure. It takes time. It takes practice. But all the hard work is paying off in a very big way.

And that makes me very, very happy. Just gleeful, in fact.

Onward… and upward… always.

Days of pushing, days of rest

I rested when I needed to, I did my best to fit in as well as I could. And I rested.
When I need to rest… I rest.

I’m taking it easy today. I rode my bike this morning, but I didn’t do any weight lifting. I’m still sore. Plus, I swam last evening after work, and I was still feeling it this morning.

So, I let myself rest.

I’ve made the mistake in the past to not get enough recovery time.

I paid for that.

I know better now – more importantly, I’m doing better now.

And it’s good.

Keeping fit, keeping strong, keeping safe

iceberg field in a body of water
I have to be able to handle the obstacles in my way

I’m a little glad my mini-vacation is over. It was great to have the time off work, but it’s also great to be getting back into my weekly routine and seeing people I work with.

I worked from home yesterday, and that was great. I wasn’t ready to go back to the office, just yet. And I got some important things done in the quiet of my own home. I love the quiet of my own home. It’s very soothing for my jangled nerves. I can do a pretty decent job of jangling my nerves myself, so being in an environment that doesn’t make things worse… well, that’s a good thing.

I didn’t get as much exercise as I should have, though. I did a lot of reading, a lot of writing, a lot of thinking, a lot of sleeping. And I did do a lot more exercise bike-riding, than usual (because I didn’t have to be anywhere, first thing in the morning). But I didn’t get up and move as much as I normally do, when I go in to the office.

This morning, I did my bike riding, and then I did more weight lifting that I usually do. I did 20 reps, instead of 10. And that felt good. It feels good to push myself. I haven’t done that, physically, for several weeks, and I can definitely feel it. I need that.

I need it to keep myself strong, physically and mentally. I need to the discipline, the dedication, the unwavering determination to take good care of myself, so I can rise to the challenges that confront me each day. Winter is coming. And I may have to do more physical work then – shoveling and such. I have to be in decent shape, so I don’t knock myself out. I also need to not get stiff and sore and locked into a certain physical position from sitting for hours and reading/writing. I need to break up my activities and take time to keep strong and fit.

I also need the exercise to keep my head clear. It’s been the number one factor in my accelerated recovery, I believe. Not everyone is the same, but I noticed a huge jump in my capabilities, when I was exercising regularly. And when I slacked off for about a year, because the migraines were bothering me, I noticed a decline in my mental capabilities.

Especially now, when I feel like we’re under constant ideological assault by the different political parties and vested interests, I need to be able to reason and think clearly, to be able to tell truth from lies and defend myself from people who are preying on me because they think I am weak. I also need to defend myself from well-meaning people who think that sheltering me or protecting me from my “diminished” state is the thing I need — rather than pushing myself to improve.

I saw a friend of mine yesterday who knows about my TBIs. They also seem to think less of me, because of the injuries. They say things like, “Don’t push yourself too hard” or “Make sure you don’t over-extend yourself.” They talk to me like I’m a bit dense. Huh. I guess they don’t realize that having a slower processing speed doesn’t mean I’m stupid. It just means I process information differently. I guess they also don’t understand that extending myself and pushing myself is what actually helps me get ahead in my life. It’s what helps me grow. It’s what helps me exceed the expectations of anyone and everyone around me.

I need to push myself. I need to over-extend myself. And then recover. Take the time to regroup, heal up, and then get back into the midst of things. I hate when people do that. It’s demeaning to me, even though I’m sure they mean well, and are only trying to help.

But for the record, it doesn’t help me. It just holds me back.

So, it’s back to pushing myself a little bit. Each day is a stretch for me, to be perfectly honest. It’s difficult, and it gets progressively more difficult over the course of the week. Mondays are not easy. Tuesdays are harder… Wednesdays take a little more out of me… Thursdays are like walking into a fog… and on to Friday is just one long exercise in wading through fog and confusion.

But as long as I rest up on the weekends, I can get myself in decent shape.

Of course, this is all dependent on me keeping myself physically active. The past week has been kind of a “test run” for me, in how I would live, if I didn’t have to go into the office every day. Or even if I didn’t have to go to work. True, I’ve got like 20 years before I’ll be in retirement age (they keep moving it back), but I need to think about how I’ll live my life, once I’m not going into an office every weekday. Plus, I might get a remote job at some point, where I won’t be required to go anywhere. How will I live? How will I take care of myself?

Clearly, I have to do some more thinking and planning around that. So, now’s a good time to start.

Anyway, the workday is upon me, and it’s time to get moving.

Onward….

Just a little hope for our times

dark clouds with light appearing behind
Some light always finds a way through

Like a lot of people in America – and the world at large – I’ve become increasingly concerned about what’s going on in Washington, right now. The “joker” who people either loved, or who didn’t take seriously, is putting people in power with a demonstrated track record of racism, discrimination, and attacking people who are not like them.

And I’m not okay with that.

Likewise, I’m not okay with the media downplaying the risk. Nor am I okay with the Washington politicians who are aiding and abetting this — or simply not standing in the way of these people who are shredding, piece by piece, even the faked appearance of human decency. Shouting “Hail Trump!” with Nazi salutes, quoting Nazis to justify their positions, and so blatantly aligning themselves with the ideology that killed millions up on millions of people in Europe, as well as worldwide. I just don’t understand how anyone in a position of influence in Washington can sit by and not throw themselves between these people and their constituents.

I don’t understand why more elected officials aren’t standing up and denouncing this direction we’re headed. And it is we who are headed there. It’s not just someone else. It’s all of us… getting dragged down by people who do not value the full range of human life, and who feel completely justified in making life so difficult for others.

I understand why people voted for Trump. But now that he’s showing his colors, I don’t understand why they continue to support him. People seem to think they’re immune, they’re safe. All his behavior and priorities won’t work against them, and so that’s okay. Except, at any time, in the most unexpected ways, any one of us can end up on the business end of his political cattle prod. Especially those of us with disabilities like brain injury, that happen as a result of chance or dumb luck… or just happen… and leave us vulnerable and living in constant fear for our lives.

I’ve been in that position for many years, now. I’m not sure I’ve never been in that position, to be honest. I’ve had hidden difficulties that I didn’t dare show to anyone. I’m anonymous on this blog for a reason — it’s often not safe to reveal to others that you have sustained a brain injury (or two or three… or nine, like me). That disqualifies you instantly from so much, simply because of people’s misconceptions.

And now it’s even worse, because it’s not just people’s perceptions and their personal sentiments that work against you. Very soon, unless that man is stopped, it can be public policy, as well.

I’m incredibly fortunate to be able to cover up my difficulties and “do the dance” of hiding my challenges and deficits. I’ve spent a lifetime refining my techniques, and they work. Most “regular” people never want to think you’ve got difficulties. They never want to even remotely suspect that there’s anything “wrong” with you. They want to think “the best” of you and not so much as imagine that you’re different from them. They don’t want to know that you have any particular needs. They don’t want to see that you “can’t keep up”, and if you fall behind, they either prod you to work harder, or they distance themselves from your vulnerability.

Especially now, when the disdain and disgust for anyone who is “less” than the Aryan ideal is an open target, from the very top, down. I’m going under deeper and deeper cover, as the days go by. And I’m not sure when it’s going to change.

Because now my faith is so eroded, I just don’t know who to trust, anymore. People I once counted as friends were willing to look past ignore and discount the bigotry and white supremacy of someone who aspired to take over the highest office in the United States of America. And they helped him in that bid. They decided to ignore the plight of the poor, the disenfranchised, the non-white, the disabled, the non-male… anyone who did not match the ideal held up by the neo-Nazis… it’s open season on them.

Of course, is it really any different, for many types of people? I’m thinking particularly of the protesters out in North Dakota who are protesting the threat to their water. The Native folks out there – indeed, all through this nation – have been on the receiving end of that kind of behavior for centuries. Indeed, anyone who was original to this land “got it” from the European settlers – whoever had the power, got to do whatever they wanted to everyone else.

And so it goes. Misery upon misery. Injustice upon injustice.

Where is there hope?

I believe there is hope in the small places of our lives. The times when all the distractions of the world fall away and leave us with a chance to come to life in the moment. When we help someone with a door that won’t open easily. When we help someone up, after they’ve fallen. When we take steps to help others in even the smallest ways. When we see others doing that, as well.

Ultimately, yes, I know – the rest of the world can be a terrible place, and people who abuse power… well, they abuse power. Takers take. Haters hate. And all around us, we see signs of fear running people’s lives. But there is hope. In the help we offer to others. In the help others offer to us. I’m not saying don’t call your representatives. DO call your reps in Washington. Prod them to do their jobs and discharge their duty to protect this nation from a fascist takeover. And at the same time, do what you can to assist others… as well as help yourself. Civilize your own world, one act, one decision… and another act at a time.

Most of all, don’t despair. There is always cause for hope.

Because the broken places are where the light gets in.