And in the end, we learn…

Some days you nail the holidays, sometimes the holidays nail you.
Some days you nail the holidays, sometimes the holidays nail you.

This trip to see family for Thanksgiving has been chock-full of lessons. I’m still sorting them out. Some of them, I may forget, by the time I get home, so I’ll write them down here, and come back to them later.

  1. Having a perfect life is no guarantee of happiness.
  2. The people who appear to be the most powerful and privileged are often suffering under terrible burdens. Sometimes it’s their very burdens that drive them to be more poweful and privileged than anyone else.
  3. People who are innately talented and sharp, don’t always end up in the best circumstances. People who work-work-work their asses off can accomplish great things.
  4. The people who seem to be the most wealthy, are often very poor in their own hearts.
  5. It helps if you’re attractive and have a ready smile.
  6. People are surprisingly judgmental of others who are simply different.
  7. No matter where you look, there are people in some kind of need.
  8. People dislike having to question their most fundamental beliefs. They’re a whole lot easier to get along with, if you pretend to agree with them — or at least don’t judge them.
  9. Most people I know are very set in their ways about how women should act, and how men should act. Come to think of it, they’re very set in their ways about how “normal” people should act.
  10. It usually pays off to keep your head about you and maintain a cool demeanor.
  11. If you can’t do #10, step away. Give it a few minutes.
  12. Getting enough sleep, drinking enough water, and eliminating regularly, will do wonders for your interpersonal relationships. It’s all about the flow…
  13. Life is short. Be kind.
  14. Sometimes, all it takes to get people back on track in mind and spirit is a long card game.
  15. Winning a hand of cards is restorative. Losing gracefully, four hands in a row, is ennobling. Having a good laugh at yourself being a sore loser is good for everyone at the table.
  16. Many things are awful. But they pass. It makes no sense to let awfulness get hold of you and trick you into thinking it will last forever.
  17. Everything looks easier in hindsight.
  18. All those old resentments I held against my in-laws for having so much more than me, and providing so much more to their kids, now pales compared to the peace I have in my life. They don’t have that peace. Their opulence is not saving them.
  19. My “country hick” insecurities around my in-laws are still there. I still feel like an idiot when I am around them.
  20. However, I have not understood the source of my insecurities, till recently. I thought, for years and years, that I was less intelligent than they, and I was too slow. As it turns out, by the time we reach their home, I am usually exhausted from driving, my sensory issues are out of control, after dealing with my own family, and I am literally not myself. My ears are ringing, I’m slowed down by fatigue, my noise and light and smell and touch sensitivities are all on HIGH ALERT, and I can’t understand what anyone is saying because the television is usually blaring. It’s a total onslaught of sensory overload, which my in-laws have to immerse themselves in, because they are so deeply unhappy as they follow all the rules, and they need something to dull their intense pain.Their coping mechanisms make it very difficult for me to function. It’s not me, that’s the problem, it’s the environment.
  21. My in-laws are trapped in a “perfect” life, doing things they never really questioned, and their difficulties with that are simply too much for them to handle. They’ve decided to be happy, simply being successful and popular, everything looking good on the outside, but deep down inside, being so sad and lonely.
  22. My in-laws cannot accommodate people who are different. They get disgusted with people who aren’t functioning”normally” due to invisible conditions. They don’t understand how people can have limits that are difficult to explain, and you don’t live up to their specific expectation of how you “should” function, they can get pretty mean-spirited. Their intentions are good, but their follow-through sucks.
  23. My parents are surprisingly resigned to getting old and infirm. Well, my father is, anyway. He’s giving up and giving in… I read some things he wrote, and it makes me sad that he’s not fighting it more. He’s got a lot of years left in him, but he’s talking and thinking like he’s going to die before long. His handwriting has gotten noticeably worse over the past year. I think his diabetes is catching up with his brain function. And I’m literally not sure when/if I’m going to see him again.
  24. My family is much better at accommodating individual needs and limitations, than my in-laws. My in-laws think a pill fixes everything, while my family believes community fixes everything. Small wonder. We’re all a bunch of farmland hayseeds, here, and there are plenty of “neurodiverse” people in our midst, due to brain injuries, congenital defects, poor medical care, etc. There are a LOT of “different” people here, so folks know how to handle them, for the most part. And the social rules here are so strict, everybody knows what they should be doing in any given situation, so it makes it possible for people to function, without thinking much about anything. It’s interesting.
  25. Holidays are borderline hell for me. There is TOO MUCH ACTIVITY, and the expectations are too high. It’s TOO LOUD. Too many smells and changes in routine. I dread it. Every bit of it. Including all the parties and social activities. And the holidays are not easy for my spouse, either, who also has sensory issues but is less aware of them.
  26. Both of us struggle terribly, at times, so it’s important for me to keep my act together, so only one of us is going off the rails at the same time.
  27. I am so happy to be driving home today. It’s a full day’s drive, and we’re going to take our time. Get out and stretch. My left hip is killing me. Not enough exercise.
  28. I’m glad we made this trip. And I’m even more glad to be going home.

And now, it’s time for a walk.  A long, long walk, before I get in the car and sit for 9 hours.

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Getting back, one step at a time.

Adrenaline - I got more than my fair share, this past weekend
This is Adrenaline – I got more than my fair share, this past weekend

Full weekend.

Ugh.

It was good, though.

I got the critical things done ahead of time, and then I spent all day yesterday with a buddy, going to see an exhibition of Japanese art and culture. It was pretty amazing – especially seeing things that real people made with their hands, instead of something that they made on a computer. The handiwork of some of the furniture was amazing.

I wish I had more energy to take it all in, but yesterday was a pure adrenaline day. I had to help my spouse the night before with a business activity (their back is out, so they need assistance), and not only was I pushed really hard to do a lot of things, but I was up past midnight on Saturday – and I rarely sleep in – so I did not get enough sleep for Sunday.

Yesterday was good. We checked out the art, the craftsmanship, the joinery, the materials… and then we got some lunch – late. My routine was completely blown away. We were near a neighborhood where I used to eat, and sure enough, the old taqueria was there, where I used to always get massive burritos for a very low price. The store burned down, during the years after I moved away, but I thought for sure they would rebuild, because they were so popular – and sure enough. Line was out the door. And the food was still amazing.

We ended up hanging out the entire day, and we had dinner at my home with my spouse, who is actually much better friends with this individual than I am. We’re all on good terms, so it was a good time.

I just had no time for myself, which is a problem on the weekends. I really need my downtime – space when I am only doing things that are in my head and my intentions. Or I pay the price.

I’m feeling it today. I started to get a migraine yesterday, but I got an hour-long nap, and that helped. Work, work, and more work. Not so great for my system, which needs balance.

This week I will balance. I don’t have a lot of appointments. Just two, compared to the past. I think I’m going to back off on my acupuncture and chiropractor, because I am really tired of not getting home till 8:00 p.m. and then having to make dinner, and not eating until 8:30 or 9:00. It’s too late for me. And I’ve been pushing myself for too long, trying to fit everything in.

I just want my routine back. I just want my regular schedule. I have to have it, or I am toast. And if others cannot accommodate me, too bad.

It’s actually good that I am getting to this point. I have been pushing myself very, very hard, for a long time, and it’s about time that I really focused on just taking care of myself in ways that are less rigorous — and are closer to home.

It’s all a lesson.

Onward.

Up and at ’em

I’m not depressed anymore.

I was depressed for a number of weeks. Just feeling down.

But now …

Something has lifted off me. For the past several days, I’ve been very active – making out my lists of things I wanted to get handled, and handling them… all in good order.

I’ve taken care of some things around the house I’ve been wanting to do for years. Simple things, really, that I just couldn’t get started before. Covering up the air conditioners for winter. Cleaning out leftover pots and containers that were sitting in a corner of the back porch for some reason. Organizing things around the house

And exercising, first thing in the morning.

I guess I was pretty depressed for a while, feeling poorly and also feeling sorry for myself.

No more. Something has shifted with me — probably the prospect of a week and a half off work for the upcoming holidays. It’s got me moving again.

And it feels pretty good.

Well, anyway, off I go. The day is waiting.

Onward.

Setting a new pace

Picking up the pace – just the way I like

For the first time in months, I got up this morning and exercised. It’s been way too long. I’ve exercised on and off, over the past couple of years — more off than on.

And I’ve missed it.

A lot.

The thing is, I don’t realize how much I miss it, until I’m doing it again and I remember. It’s getting me doing it again – just starting – that is the monumental challenge. I feel like I’m delaying getting on with my day, and I’m not using my time productively — though for what reason, I cannot tell.

I think it has had to do with the fact of my commute. And the feeling that I’ve had for years, that I am behind on my work, I am not making any progress, and the life force is being sapped out of me, slowly but surely, but the frustrations of that job. I’ve felt like I’ve had so little bandwidth, so little time and space for myself to just think, that I’ve coveted every last moment of free time to spend on myself and my own activities.

I think another factor has been starting to read again. Now that I am reading again, I just want to spend all my time reading, thinking, writing… My short-term working memory feels like it’s improved dramatically — or at least I’ve come up with new and different ways to think about things, so that I can remember them that much better. In any case, I don’t feel confused and feel like I’ve permanently lost my way when I’m reading, anymore. When I feel like I’ve lost the train of thought, I just back up to where I remember having read something, and I just re-read.

And if I find I’m getting pulled off in all sorts of different directions by a lot of conflicting distracting thoughts — or my head is going nuts with thinking about a ton of different stuff that’s related to what I’m reading and builds on it further in new directions — I just take a break. Or I write things down for future reference.

Now that I’m reading again, and I’m retaining it — or at least have the sense that I’m comprehending what I’m reading — it’s all I want to do. Read and write. And share.

My presentation at that community gathering went extremely well, last week. I nailed it, I do believe. And I am looking forward to doing more public speaking in the future. It really gives me a lot of energy, to stand in front of a room of people and present on something I know about. I get so excited about it, and others pick up on my excitement, as well. It’s really gratifying to share what I know with others — and to realize that I can actually do this.

It’s massive progress, compared to where I was just a few years ago. A few years ago, I was so deep in muddling through the disconnects in my brain, that I could not begin to even think of doing public presentations. I had done presentations at work in the past before my fall in 2004, and they went well, but I never actually thought much of them. They were just one more blip in the sea of churning input and data that made no sense to me and had very little rhyme or reason. After I fell, my thoughts became so disorganized, the idea of getting up in front of anyone and speaking — even according to a script — turned into an impossible prospect.

It’s taken years, but I am finally past that. Even better, I am really presenting and interacting with my audience — not just talking to a script and getting the hell out of the room as quickly as possible. I spent much more time last week on taking follow-up questions and discussing my presentation with people after the meeting, than I did actually making the presentation. And that’s a HUGE sign of progress for me.

HUGE.

I was able to not only present, but also really flow with it — improvise when I came to a slide and I couldn’t remember the exact words I intended to say. I had intensely practiced my presentation a lot over the past days, and I had practiced recovering from flubbing up many times, too. So, I was able to keep going. After all, whatever I said that seemed “wrong” in my head, was perfectly fine with everyone else, because they didn’t know what I was “supposed” to say, and the things I did say were relevant to the discussion.

After the presentation, we had Q&A, and I took a bunch of questions. Probably about five or six. And I did them so well, that the questions kept coming and they had to cut me off, to make room for everyone else. I was able to then sit down and pay attention to what the other speakers were saying — there were two that followed me. I didn’t let anxiety about how I did distract me. I didn’t sit there and fret about whether I did well or not, what I remembered, what I forgot, and those places where I stumbled and messed up. I just let it go, and I moved on to the next experience, trusting that I had done my best and it was perfectly fine.

After the meeting, I chatted with a number of folks, who had interesting things to say and some useful information to share.

It was a good meeting, it was a fantastic experience. And I am really looking forward to more opportunities to speak in public.

What a hoot. When I think back to five, six years ago… there is no way I felt that being a public speaker was in reach for me. No way. I dreamed about it, I thought about it, but I didn’t actually have the sense that it would ever truly happen for me. I was too caught up in my issues, too muddled, too confused, too insecure and frazzled by everything life threw at me. There was no way I would have guessed at the time that I’d actually be standing up in front of a room of 70 strangers, talking about something that meant a lot to me.

I had actually tried to do that sort of thing, several years before. I think it was not long after I had fallen and got all jumbled up. I actually had a pretty successful presentation, but the whole experience was so overwhelming for me, I effectively went “underground” and never dared venture forth again. There were too many people, there were too many questions, there was too much energy. I just couldn’t deal. At all.

This time was nothing like that. It was the complete opposite.

And it feels like a stepping-stone to the next stage for me… a gateway to what else is possible in my life. I have a new direction, I have a new sense of what I’m truly capable of, and with my new job and new schedule, I can truly take the steps I need to take, to move in a different direction with my life, at a pace that suits me — not that’s dictated by the outside world.

It’s all good.

Onward.

 

 

 

 

 

 

 

 

 

 

 

Movement is the key – feed the good wolf

Gotta keep moving. Some way. Some how.

I did a little yard work, first thing this morning, then took off for the trails near my place, and it was great to be out on such a beautiful day. It’s cold, but it’s beautiful. I try to get out every chance I get — especially on the weekends. It clears my head and it gives me needed exercise, especially in the winter, when the daylight hours are short, and I spend a lot of time indoors.

I needed to clear my head of the cobwebs from last weekend, and figure some things out about why it was so difficult for me to keep my sh*t together over the long weekend. I need to figure this out, because winter vacation is coming up, with twice the amount of free, unstructured time, and I don’t want it to turn into some nuclear explosion, where everybody feels like they’ve been blasted and irradiated for days and weeks afterwards.

No thanks. Gotta figure it out, so I can just live my life.

Something occurred to me today, as I was out for my morning hike in the woods. I’ve been aware of this before, but it became painfully clear today. Namely, that I am really happiest when I am moving, when I’m active, when I’m doing something constructive. My spouse likes to “take it easy” and relax. It makes them happy to do that, and they feel most comfortable when they are sedentary and just enjoying themself.

Not me. I need to be moving. I need to be active. I have a LOT of energy, and I need to use that energy for something productive, or it “backs up” on me and it turns against me. If I can ‘t use that energy productively, it feels terrible. I feel terrible. If I’m not moving and keeping my attention focused on something specific, the general pain I have just about every day becomes too much for me, and I start to snap and bite like a German shepherd (metaphorically speaking, that is – I can’t remember ever actually biting anyone).

Using that energy for something constructive is the best way I know to keep that abundance of energy from turning me into a raving maniac. And it’s also the best way for me to actually do something meaningful with my life.

I have always had a very keen sense that I am mortal, that I’m not going to live forever, and I have a relatively brief opportunity to do things that will be useful and productive, before my days here are through. This knowledge has always propelled me forward, and I truly believe that not using every chance we get to make the world a better place, is a poor use of time and energy.

Oh, sure, it is important for us to take care of ourselves and recover from our spurts of activity. But in my book, everything needs to serve a greater purpose, or it’s just a total waste of friggin’ time.

And none of us has all the time in the world to waste.

So, yeah. I need to keep my mind and body busy. I need to keep moving. I need to be constantly headed in some specific direction, or I go nuts. The pain builds up and makes me crazy. I start getting loopy.

And when that happens, I can very easily take it out on the people around me who are closest to me.

Which is not good.

So, yesterday I stayed active, and I’ll do the same today. Even when I’m not appearing to be active, like when I’m watching television at night with my spouse, I can keep a little bit of movement going. I need to get up periodically and move. Stretch. Get some blood flowing into my cold hands and feet. Just don’t stagnate and let the discomfort and negative feelings get hold of me. I need to do something constructive with my mind, so that I’m focused on something positive instead of something negative. Sitting and marinating in all the energy I’ve got coursing through my veins… well, that’s just no good.

There’s an old saying about us having two wolves inside us — the good and the bad — and we can choose which one we want to feed, so it becomes stronger. I’m going to feed the good wolf today, and try to do that every day, to the best of my ability.

Tony Dorsett is not dead

Tony Dorsett – all those years ago

The public debate about football and its effects on cognitive health — that is to say, how all those years of head trauma can really screw you up, years later — is heating up even more. PBS ran the special “League of Denial” about the NFL’s cover-up of the brain-damaging effects of their brand of football, and now Tony Dorsett and several other former pro players have been diagnosed with early signs of CTE – chronic traumatic encephalopathy. Bleacher Report has a good write-up on it here, and ESPN has their own, which I read yesterday.

I was really encouraged to read that there’s actually a way to detect CTE in living people. Up to recently, the word was that it can only be definitively identified in the brains of dead folks. But apparently now UCLA has a fix for that. So, that’s encouraging.

But it’s never good when anyone has CTE, and both Joe DeLamielleure and Leonard Marshall were also diagnosed, but Tony Dorsett…? That was a pretty emotional discovery for me. He was one of the players who got me really excited about the game when I was a kid. I always loved football, but there was something about his performance that was even more compelling — and it almost made me a Cowboys fan, for a while. Almost.

The article over at Bleacher Report has a writeup and includes the full gamut of responses from readers — everything from “the players knew the risks, and they did it anyway,” or “they just want to milk the system” to “they’re upset because they’re not in the limelight anymore and they’re just a bunch of cry-babies looking for attention,” to “you’re an idiot – the NFL covered this up for 15 years,” to well-informed responses based on science, to flat-out denial that anyone other than linemen could sustain repeated head trauma. And here and there are counter-arguments to refute ignorance-based “rationale.”

There’s a lot of back-and-forth talk, some more useful than others, but the most important thing is, people are talking about it, and more awareness is building around the whole issue. It would be nice if folks could share information and keep an open mind without calling names, but this is the internet, after all. I do find it hopeful that people are quoting actual scientifically based facts. And what I find most interesting is how many readers are reporting that parents are not letting their kids play football.

One of the questions that comes to my mind is whether all the talk might be doing more harm than good. There’s a lot of knee-jerk reaction going on, and brain injury is such an emotionally loaded subject which hits so close to each of us, that a lot of people just stop listening as soon as they hear “brain injury”. It’s not that they don’t want to learn or understand — we’re wired to shut down our higher reasoning, when we feel threatened at a deep level, and brain injury hits a lot of us in our most vulnerable spot.

A broken bone you can see and set and watch heal on the x-rays. A broken nose you can push back into place, tape up, and wait to get better. But a broken brain? It’s invisible. It’s mysterious. You can’t even see the real issues on imaging results — at least, not those that are widely available at a reasonable cost. And you don’t have a clear-cut route to recovery. Plus, we have this really bizarre expectation (based, I’m sure on decades of science that told us it’s so) that you only have so many brain cells, that once you damage the brain, you’re done, and there’s no turning back.

Only in the past years has science amended its views — and it’s done so silently, without so much as a hint of an apology for training us all to give up on ourselves.

What’s more, I think we’re not helped by the sensationalistic (if true) focus that’s being brought to CTE and the long-term effects of repeat head trauma. All the press focusing in detail on the horrible things that happen to you after head trauma might be cementing the public perception that once you’re brain-injured, that’s it. Tony Dorsett says he’s being proactive and is going to fight this and live his life to the fullest. But given how little is generally known in the public about brain injury in general, who knows how seriously anyone is taking this? I read one article where the writer referred to his condition as his “demise” — a freudian slip, if ever I heard one.

Frankly, I’d be surprised if anyone gave him the time of day after his revelation. Yes, he is Tony Dorsett — that is, he was. Once people find out that you’ve got “brain issues,” they have a way of distancing themselves from you. It’s something they don’t want to think about. They can’t help but imagine what it would be like for them — and it scares the bejesus out of them. So, they choose not to talk about it. They’d much rather talk to Sidney Crosby, who apparently has no more head/neck trauma issues to speak of.

From personal experience, I can tell you, repeat head trauma — even mild traumatic brain injuries — can do a number on you. It can turn your emotions upside-down, trash your impulse-control, wreck your judgment, saddle you with a bunch of unpredictable and seemingly insurmountable physical sensitivities, put you in a state of constant headache and general pain… in the process destroying your relationships, costing you your job, turning your financial decision-making inside-out, and generally doing the same thing to your life that a frat party does to a frat house. And it can all happen without you ever intending it to — and never actually wanting it to.

Now, I know a lot of folks are going to say it’s a character issue, or it’s an issue of self-control or what-not. It’s not about character. It’s about how the brain works, and how our lives are ordered as a result. And when you’re brain-injured (and unaware that you’re dealing with brain injury), the very thing that’s supposed to keep everything in order is what’s the problem.

And because it’s your brain that’s impacted, you can never even realize till it’s way late in the game — for some, too late.

The thing is — if we can all get past the terribleness of it, please — there is a way out. Brain injury, even CTE, doesn’t need to be the end. The brain is an incredibly “plastic” organism that by nature re-routes its wiring and recruits other parts to take on functionality that the original parts may have lost. There have been cases of people with advanced brain degeneration never ever showing any signs of that condition — the book Aging with Grace talks about that. And you can’t tell me that all the people who have lived full lives to a ripe old age have never had any organic brain issues. The brain is a mysterious and amazing organism. Our limited understanding doesn’t change its infinite possibilities.

If there’s one thing that I hope comes out of all this — even if it’s long-term — it’s the knowledge and experience that recovery from brain injury is possible. It is NOT a death sentence. I hope someone out there gets a clue — and publishes widely on it — about how possible (even probable) it is that a person can restore quality to their life and continue to live with meaning and purpose and a sense of usefulness, even after repeat head traumas.

Making a huge issue out of football being a cause of a brain-wasting condition is only part of the story. Saying that repeat concussions is a recipe for madness and early-onset brain degeneration is not the whole truth.And focusing only on the awfulness (to raise awareness and funding) leaves me with the feeling that this terribleness is permanent and irreversible. Logically I know it’s not 100% accurate, but part of me fears might be.

Tony Dorsett is not dead. Not yet, anyway. Who knows what will take him out in the end? He says he’s got issues. He says it’s wrecking his life. He says he’s considered suicide. And he says he’s being proactive and is going to fight this thing. There is still a whole lot we don’t know about the brain, CTE, tau, and how we might be able to clear the junk out of the brain.

Personally, my money’s on exercise, sleep, a positive attitude, staying active both mentally and physically, keeping connected to a community, and solid nutrition without a ton of artificial crap crammed in between the real ingredients. But that’s just me.

Whatever other folks may choose, I hope they do choose it, and I hope they don’t give up just because things look a little grim, right now. Things always look grim, before you have a chance to do something about them. But once you get going… you never know where it’s going to take you.

In any case, the day is waiting. I have a lot that I want to accomplish today — this whole weekend, in fact.  So, speaking of staying active, it’s time for a morning walk before I get into the rest of my day. That should get things moving…

Onward.