Done worrying about stuff — for the time being

man and woman jumping for joy on a beach

It’s Friday. Woot.

Ha – that’s pretty much of an ingrained response, just one of my habits that usually serve me well. Today, I don’t actually have a lot of reason to say “Woot!”, because this day is no different than most of the days of the past week. I haven’t been working my a** off all week, so I don’t have a ton of reasons to be jumping for joy.

It’s another day. But come to think of it, that in itself is worth a “Woot!”

I’ve got some appointments this afternoon, and then we’ll get some Chinese food and watch a movie. Nice and drab. Boring is lovely. Not a lot of drama. Just taking care of business. Maybe I’ll have a nap later, probably I won’t. That’s fine. Because I’ve been catching up on my sleep, and I don’t have a very busy day today.

At all.

Woot.

Yeah, thinking about my day, it’s pretty sweet. I have time this morning to catch up with some reading and writing, and just putter around the house. I’ll contemplate my life, think about the coming New Year, maybe take care of a few little things here and there, and get the ball rolling this afternoon.

Check the news… read some websites I’ve started following… and not worry about much at all.

And this is actually a slight change for me, since I’ve been a bit anxious over the past few days. Plans didn’t work out, or I got stir crazy, or I forgot to call people I promised to call… A while series of little annoyances set me off, and since all the Christmas activity wore me out more than I expected, the fatigue got the better of me.

But today is different. I’m just kind of hangin’ out. I’ll make those calls I forgot earlier, and I’ll go pick up the neighbor’s mail from their mailbox while they’re out of town for the next few days. Just get myself sorted and situated and settled. Enjoy the day, don’t make a big deal out of stuff… just kind of roll along and listen to some music I love. It’s not every day I get the chance to just chill out, so I’m taking advantage.

Looking back on the last year, I see I’ve spent way too much time worrying about stuff. For sure. It worked itself out, even though I was so focused on individual details — losing sight of the big picture, and getting swamped in minutiae. Maybe it’s just me getting older… maybe it’s looking back with hindsight (not exactly 20/20, but close)… maybe it’s just a shift in my priorities and interests… but I’m a lot less concerned with stuff outside my immediate control, than I used to be.

There’s only so much I can control or influence. I can certainly try, but my abilities are, of course, human, so…

The best thing to do is really take care of myself and figure out how I can make stuff work for myself. The rest of the world will figure itself out. Or it won’t. Either way, my life goes on.

And on.

And on.

Woot.

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Tending to my present… Kick-starting my future

road leading into the distance, with country landscape surrounding it

Well, that sounds dramatic. And I suppose it is.

Taking care of the present sounds so formal. It seems common-sense. And I suppose it is. But we live in a non-sensical world, these days, so it’s a lot more difficult than it seems like it should be.

Kick-starting my future is something I do — or don’t do — each day, with every choice I make. It’s a lot simpler than it sounds, and it’s a lot more complicated than it seems.

The thing is, we do this each and every day with the choices we make. We define our lives by our choices, and we further our plans with our actions. It’s not mysterious, it’s not magical. One thing leads to another, then another, then another. And all along the way, we have the chance to change direction, even slightly.

If you’ve ever thrown a ball, you know how wide of the mark you can go, if you alter the angle of your arm just a little bit. The same is true of our lives. One slight change in “angle”, and you can end up in a very different place than you originally intended.

A “little” slip on some stairs… a “minor” bump on the head… and your life can change in that instant. You can find yourself waking up each day, not knowing where you are, exactly, or where you want to go. Or you may wake up each morning wondering why the heck you didn’t get to where you were going the day before.

The brain is an amazing thing, and it’s surprisingly easy to disrupt in life-altering ways. We constantly take it for granted, like electricity or hot-and-cold running water. They’re all supposed to just work, just be there. And when they don’t… when they’re not there, we’re thrown into a state of chaos and confusion that blocks our ability to deal with anything.

The thing is, we tend to get stuck at that place of chaos and confusion. Perhaps because brain injury “rehab” is big business, with plenty of facilities billing plenty of hours to insurance companies, we don’t see a wholesale rush towards figuring out brain injury the way we should have long ago. Too many facilities make their money from people in need of help, rather than getting people back on their feet, never to need them again, so where’s the impetus to properly serve the brain-injured population? There are lot of us, with over a million TBIs added to our numbers, each year in the United States, alone, so I’d expect someone, somewhere to figure out how to end the suffering and teach people how to get back on their feet.

But no.

Well, never mind. Because there’s nothing I can do about that. What I can do is share my own experiences for everyone who’s interested in actually doing something about their situation, rather than staying stuck in something that can actually get fixed.

We all need a good dose of reality, when it comes to brain injury. That goes for health care providers, as well as those of us who get hurt. The brain is highly vulnerable. And the ways it’s most likely to get hurt are ways that hit us where it hurts the most — in our executive functioning, in our ability to plan and follow through, in our accustomed patterns that fall apart and plunge us into a steady state of anxiety… which builds up over time and impairs our ability to heal over the long term.

When we understand the true nature of brain injury (and don’t just get caught up in recycled notions that came from investigations done back in the infancy of brain research), we can also see that it is survivable.

We can — and do — recover from brain injury.

No one can take that from us. No one. Not any of the “experts”, not any of the scientists or neuropsychologists or psychiatrists.

The thing is, “recovery” means more than just restoring prior functionality to the injured brain. ‘Cause people, once the connections in your brain are disrupted, they stay that way. You can’t rewire broken connections. But we can — and do — create new connections that may function a little differently, but are still every bit as useful (sometimes more useful) than the old ones. And ironically, in my case, I find that some of my new connections are much, much better than my old ones, because I formed them with more life experience than before.

What we’re recovering is our personhood. Our dignity. Our self-respect. Our individuality. I think the brain injury rehab industry lacks an understanding of how much more important that is, than any level of physical or cognitive processing. People get hurt all the time. We break bones. We get cut up. We get smashed and smooshed and crushed. And then we recover. We may not have full range of use after we heal, but we get on with our lives. We may limp along or not be able to reach over our heads to get stuff or have to stop shoveling our own snow, but that doesn’t keep us from living our lives.

Same thing with brain injury. We may not restore our brains to their former glory, but we can adapt. Losing certain brain functionality is not the problem with TBI recovery. It’s losing our Sense-Of-Self that does a number on us. It’s the panic that sets in when we find ourselves doing things that are “unlike us”. It’s the repeated little shocks of being surprised by one thing after another that didn’t used to surprise us. It’s the gradual disappearance of our friends and family who used to know us as one person, but can’t adjust to the new person we’ve become. That loss of the Self, that erosion of security about who we are… that’s the biggest hurdle to overcome with TBI.

Because if you don’t deal with that, your functional recovery is going to lag. Brain injury recovery is a re-learning process. It’s all about re-training the brain. And if you’re totally stressed out over everything, you can’t learn properly.

It’s that simple. And it’s that complex.

And it doesn’t need to be the big-a** mystery that we make it out to be, because it has to do with the braaaaiiinnnn.

Brain injury recovery is a matter of living your life. Learning to live your  life. Teaching yourself how to get on with things, when everything looks different, feels foreign, and doesn’t square with how everything used to be.

It’s about choice. Action. Reaction. Learning. Adapting.

And when we tend to our present, choosing to learn from each and every conscious moment, we move ourselves towards a future of our own making.

As the current year winds down and the new year approaches, I hope you can own that, yourself, and — whether your brain is injured or not — take responsibility for a future you can absolutely positively make up as you go along.

Thinking beyond Christmas – so I can relax and enjoy it now

I’ve got my hands full, for the next 24 hours. I’m coming down to the wire with shopping and cooking and preparation for Christmas Day tomorrow. My spouse and I typically take it easy on Christmas, when we’re at home.

And this year, like last year — and several other years before that — we’re at home. Just the two of us.

No two days of driving, in both directions.

No packed houses with lots of people vying for our attention.

No navigating family dynamics and going the extra mile to let everybody just be who and what they are.

None of that. Just peace. Heavenly peace.

And to make sure it stays that way, I’m thinking ahead to the coming week, getting my schedule clear in my head so I don’t have to deal with a bunch of surprises, on down the line. I’m not very fond of surprises. I’ve got enough on my plate that I already know about, and I haven’t been sleeping well, lately, so that makes me more irritable and hard to deal with. I need to take better care of myself wherever I can, for the sake of everyone around me.

And that means streamlining and planning ahead wherever possible.

What do I need to do, this coming week? We’ve got some appointments we have to attend. I also have some car repair work I need to schedule. And I’ve got a handful of things I’d like to sort out around the house, too. Like do much-needed organizing of the files on my computer and the various “thumb” drives I have. I’ve got a lot of USB drives with a lot of stuff on them, and it’s time I consolidated them. Also, cleaning up, organizing the various rooms in the house. Moving furniture we don’t use to the basement, making room for the things we do use. Making space to move and breathe and live. And unwind.

Unwinding is good. I’ve been pretty tightly wound for quite some time. Unwinding will be a welcome change.

Before we know it, it’ll be 2018. Christmas almost seems like a blip on the screen, but of course it’s not. It’s a pretty big deal for my spouse, and I need to do my part. I’ve never been much for holidays, birthdays, special events — they all seem like just another day to me. But being part of something bigger than me — which also really matters to my spouse — is more important than indulging my Bah-Humbug spirit of the season. Just gotta put my own sentiments aside and get into it.

It’s not forever. And it won’t kill me to just go with it.

So, go with it, I shall.

And then… into the New Year with a positive frame of mind.

It’s the only way.

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.

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

Lighting a candle of my own, while the world seems to burn around me

hand holding lit match, lighting a small candle
We can’t do everything, but we can do some thing

I’m focusing on just being really kind to other people.

… Carving out my own little space of heaven on earth, where others can be treated with dignity and respect and offered what they need most – connection with a living, breathing person who sees their worth and humanity.

I don’t have all the answers, but I do know that a lot of people just want to connect, just want to talk, just want to be treated like a real human being.

And that’s what I’m going for these days.

In the supermarket… sharing a moment with someone trying to figure out which package of chicken to buy… in the elevator, just chatting with someone who wants to be acknowledged… at work, where everyone is worried and uncertain… at home, where my spouse wants to just hang out and spend some time together.

It takes time to connect with other people. It takes energy. And at the end of a long day, I don’t always have the strength to do as much as I would like, or to do it as well as I’d like.

I could have stopped a little longer to talk to the woman in the supermarket. I could have said something more intelligent to the veteran who was sharing the elevator ride to the 2nd floor. At work, I could go out of my way to be a little more friendly to people. At home, I could spend more time just hanging out with my spouse, talking about things we both care about.

I can think of many things I would like to do better. And each time I make the effort, I learn a little bit more.

I’m not perfect. But I can do something.

And so I shall.

Onward. Together.

Shared – The Effect of Brain Injury on Caregivers

caregiver-stressThis is such an important topic — for caregivers, for survivors who rely on them, and for everyone else who interacts with caregivers under stress. It’s also important for employers to know. Or maybe I’m asking too much…?

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Read what Laura says here: The Effect of Brain Injury on Caregivers … and pass it along – share with others

Merry Christmas – may it be so

Merry_ChristmasMerry Christmas, everyone. Happy Christmas. Frohe Weinachten. Feliz Navidad. And many more wishes in languages I do not know.

I hope it is a good day for you, and that you find peace and a measure of happiness before the day is through.

Christmas is a tricky time for a lot of people, including those who have some sort of limitation or particular need. One of the most poignant things about it, is actually the spirit of it, which so often gets lost in the shuffle. The original story (whether you’re a believer or not) is about people under duress making the best of a bad situation.

A whole country is uprooted by a tyrant (of sorts) and hauled away from their homes, so they can be taxed in the town of their family’s origin. One couple in the midst is a man and his very pregnant wife, who have to make the trek, regardless of her condition. Nazareth, where Joseph and Mary were from, was a kind of crappy area — economically depressed and not the sort of place “nice” people lived. So, Joseph probably wasn’t all that well-off to begin with, and dragging him away from his work as a tradesman to tax him, was just heaping one injury on another. It wasn’t like he made that much money, to begin with — but he gets taxed and he loses however many days or weeks of work. That’s rough.

And when Mary and Joseph get where they’re going, there’s literally no room for them in habitable lodging. So, they end up in a stable. In a strange city. Anyone who’s spent time around farm animals, knows this is about the last place you want to deliver a baby, but apparently that’s where it happened, and the child ended up laid in a feeding trough for his first night on earth.

Some entrance.

Now, I’m not a hugely religious person, these days. Once upon a time, I was, though. I was raised in an evangelical, fundamentalist Christian household and I was “raised in the church.” It was my primary social network. My parents are still very involved in their church community, as are some of my siblings. I’ve always been pretty spiritual (even after I stopped believing the way my family did), and that endured through the years with a strong tendency to feelings of mysticism and spiritual connection with something higher.

My TBI in 2004, however, pretty much erased my religious feeling. Suddenly, it just wasn’t there, anymore, and I could not for the life of me figure out why anyone would have any interest in religion or spirituality. My spouse has always been very spiritual, and I can assure you, the times when I did not pray along with them were not the best moments in our marriage. I rolled my eyes and tapped my foot impatiently, waiting for them to finish, which really hurt their feelings.

My lack of spiritual feeling has persisted somewhat, but in the past few years, that’s started to change. Just goes to show you how the brain continues to alter and develop along different lines, over time. And I’ve gotten some of my spiritual feeling back — though I have probably gotten back more willingness to play along so I don’t hurt others’ feelings, than I’ve gotten back my old religious fervor.

But religious belief aside, the story behind Christmas is one that really resonates with a lot of people. It’s all about being forced into a less-than-ideal situation, and making do. It’s about modest, humble circumstances setting the stage for later greatness. And to me it’s about dealing up-front with the indignities of life and recognizing that beneath the limitations of your circumstances, there lies a potential for rising above it all. The indignities of not having enough, of being pushed aside, being just another face in the crowd, aren’t the whole truth about who we are and what we’re capable of. We may not all be divine (though some believe we are), but we can surely rise above our circumstances, like that little baby who spent his first night in a feed trough.

Making do… that’s pretty much what this season has been about for me. I have been working overtime for months, keeping my emotions from getting the best of me, and that’s taken a toll on my system. It takes a lot of energy to keep yourself on an even keel, when everything around you feels like it’s going nuts, and I have really felt it, this holiday season. Not having a doctor I trust and can rely on… that’s a subtle source of pressure. Being told my neuropsych is retiring in the spring… that’s more pressure. Being threatened with a layoff in the immediate term… that’s a direct and intense source of pressure. Having everyone around me at work be in rotten spirits because of the impending job changes… that’s an indirect but distracting source of pressure. Expensive car repairs and drama while traveling over Thanksgiving wasn’t easy. Being sick has been a disruptive challenge. And having my spouse being sick, too — and increasingly disabled — has been hard to get my head around.

Most of this I’ve had to deal with on my own, but I don’t mind. It’s actually easier for me to handle things alone, so I don’t have to verbalize with people. Talking out loud is yet another source of pressure, and I’ve been doing it pretty poorly, this holiday season. Seriously — I haven’t been able to describe things I’m looking for, and people in stores don’t take kindly to it. It’s been kind of funny, actually, when I’ve tried to describe caulk… or a little bracelet with colorful beads… and failed to do so.

I’ve kept it together, more or less, but it’s taken a toll.

The energy that I’ve been using to keep myself on an even keel had to come from somewhere, and my thought processing has not been the sharpest. I’ve been forgetful, scattered, emotional, foggy, and that all makes it even worse. It’s really been a challenge to do the kinds of things that used to come easy to me, and that’s hard to take. I can’t believe I have to deal with all of this — and take things so much more slowly, plan so much more carefully, and resort to what feel like remedial measures.

And through it all… I                      am                   so                  tired.

But then I come back to the Christmas story. And I can relate. I have a pretty good idea how it must feel to be uprooted from your home and dragged somewhere else to pay someone money that you probably don’t have. I don’t know how it feels to have a baby on the way, but I know about long journeys and having more asked of you than you feel you can spare. And I know the feeling of despair and overwhelm, when everything around you seems to conspire against you, and you can’t catch a break.

I also know what it’s like to make do with what little I have. This year, we don’t have a tree indoors, because the artificial tree we’ve had for years has gotten old and smells terrible. It’s musty and dusty and the materials are starting to degrade and off-gas, so after a couple of tries, we ended up just putting the tree out on the back porch and arranging our presents on a beautiful golden cloth we have, surrounded by colored lights.

It’s modest, but it’s beautiful, and later I’ll roast the turkey for our Christmas dinner. We’ll have a quiet day, today, and just enjoy the quiet in our own merry way.

We’re better off now than we’ve been in quite some time, and for that I am grateful. We have our issues, but we also have our ways of dealing with them. It’s Christmas. Time to focus less on what we don’t have, and more on what we do.

May your Christmas be merry, as well.

Two more days… then home!

Today we rest at my parents’ home, then we are driving home tomorrow… missing the worst of the Thanksgiving traffic.

I’m going to pause now for a Christian moment, since I have been surrounded by very religious Christians for the past 5 days… Praise God Almighty! Praise Blessed Jesus!

I only have another 30 hours to go (give or take) till I am back in my car and headed HOME to my own space, my own diet, my own schedule, my own life.

This really has been a very challenging time for me. The most challenging thing, by far, has been dealing with people’s prejudices and judgments. My spouse has been having some difficulties, being off their schedule — as have I. They’ve been tired and irritable and have not been thinking clearly or as mobile as one would expect. And both sides of the family do not handle that well. So, they are hard on my spouse, which is hard for me to watch. My in-laws, especially, are pretty judgmental, and they put all kinds of pressure on my spouse to DO SOMETHING about their condition.

Get up earlier each day.

Get regular exercise.

Get a hip replacement.

Go out into the world and do all the things that people without noise and light and scent sensitivities can do.

Of course, they know nothing about the strokes, seizures, cognitive impairment, and I’m not about to tell them that, because they are exquisitely attuned to finding the worst in everything, and trying to overcome it. They will pick out the worst piece of information (e.g., if the power steering fluid had spilled all over the exhaust system, our van could have caught fire) and then they dwell on that. That will become their mantra — Something Terrible Could Happen — and they will proceed to make every thought center around that.

Which is a really draining way to live.

And now that we are away from them, I can breathe. My side of the family is overwhelming in other ways – we’re about to start the day’s social overwhelm drama – so there’s not a ton of respite. But at least it’s not that constant dark cloud of risk management and imagined damage control. At least I’m out from under that.

So, what have I learned from all of this? It’s going to take some time to figure that all out, but one thing I’ve gathered, is that I have a very unique ability to see people for what they are and accept them for what they are… regardless of their perceived disability and limitations. I can see the goodness and strength in everyone, and I can see the hidden abilities they have, which are usually eclipsed by their challenges or shortcomings. I’ve known a lot of functionally limited people over the course of my life, and none of them have actually seemed as damaged or as strange as others said they were.

I have always been this way, perhaps because it’s what I needed most from others — but never got it. When I was younger, it got me in trouble because I was taken advantage of by people with ill intentions. It’s taken me years to learn how to discern and steer clear of the trouble-makers.

What I’d like to do now, is find some volunteer opportunities to use that to help others.

I have several free days my employer gives me to use for volunteer work, so for the holiday season, I think I’ll look for a chance to do that.

Everything can be used — especially the difficulties.

Onward.

 

 

You don’t dislike the whole painting because it has one ugly color

painting-05Everything has its upsides and downsides. My life has been quite awesome, lately, and also quite difficult.

There have been days when I have just not felt like going on.

But then it occurred to me that my life is very much like a painting with a variety of colors. Not all are going to be vibrant and beautiful.

Some may be like this:

painting-color-swatch

Not very vibrant. Not very pretty. But part of the whole. Part of what makes the rest of the colors look that much nicer.

It’s all part of it.

So… onward.