About brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who had falls and car accidents and sports-related injuries in 1972, 1973, 1982-83, 1995, and most lately 2004. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications for 35 of my 43 years. I’ve done it so well, in fact, that virtually nobody knows that I sustained that injury at age 8… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

This is not a drill – maybe

My last remaining grandparent may be dying. They’re over 100 years old, and I am making the daylong trip to my family several states away, to hopefully see them before they pass. They’ve been close to the edge several times over the past few months, but this time seems different. I hope we get there in time.

It’s always a struggle, figuring out what the right thing to do is – we can’t just pick up and go whenever something seems amiss. Because things seem amiss pretty frequently, and then they level out. It’s not a short trip to my family. And I have limited energy and time. Also, if I don’t work, I don’t get paid, so taking time off is very, very expensive.

But this trip looks like it’s going to be necessary. This might be “it” for my grandparent, and I would like to get there in time to say good-bye and “thank you” for everything.

I really owe a tremendous debt to them – they set such a strong example about how to live a good life, and they overcame so many huge odds to really have a life worth living. If anyone has showed me how to stand up straight in a crisis and hold your own, how to be compassionate towards others who are different from you, and how to just love and accept people and the world for who they are (while never giving up hope that things could be better), it’s them. They also taught me the importance of staying curious, staying interested, and always learning-learning-learning about the world and the way life works.

In fact, I think it’s safe to say that I have them to thank for my being here. Obviously, if they had not had kids, then I would not have come into the world. But beyond just making my birth possible, they showed me what it means to persevere and prevail and correct your poor choices whenever you can. I never wanted to disappoint them — even though I often did. So, that pushed me to really step up and challenge myself in so many different ways.

I’ll be leaving in about 4 hours – I have a lot to get together before I leave. I have to check in with work to let them know what’s happening and to get coverage for my projects, I have to pack clothing, get the car inspected (in addition to forgetting to pay my mortgage, I forgot to get both cars inspected, this past summer, so I’ve been driving around with not one but two overdue inspection stickers), run to the bank, get some food for the road, and take care of some odds and ends that are due in the next couple of days. I don’t know how long I’m going to be away – it could be a few days, or it could be a week, but I’ve got clearance from work to stay as long as I need to.

I’m putting my list together now, to see what all I need to do. I’ve been tired lately, and I’m really distracted, so my sequencing is off this morning. I’m doing things backwards, forgetting to do important things (like make my coffee in the proper order), and I have to triple-check everything. Like packing clothes. If I stay longer than a few days, I was thinking I will need all my work clothes with me, and I was going to load them into a garment bag to take with me. Untrue. If I stay, I will be at my parents’ house, and I will not need work clothing at all. I just need one set of dress clothes, in case the funeral happens. I will need casual clothes for the everyday — just to get around and look halfway respectable.

The main thing is taking the right computers with me — my personal laptop as well as my work laptop. Also, I need to remember my camera. I don’t have a smartphone, and my spouse loves to take pictures. And my sunglasses. I can’t forget them. I’ll never make it without.  And taking all the crap out of the traveling car, rearranging everything in it for the ride. And packing an extra set of sheets, in case the people we’re staying with use scented laundry detergent we are allergic to. And putting the mail on hold. Just getting everything together.

I have my main list of things to do. Not getting too granular with it is a big change for me. I used to make long lists of everything that could possibly be covered, and I would get so caught up in making the lists, that I would lose track of where I was and have to abandon my plans half-way through. I would also forget important things and wear myself out, trying to juggle everything that didn’t even need juggling.

Now things are very different, and I’m feeling pretty calm and systematic about my planning. I am tired, I know, and my memory and attention are a little sub-par, these days. But I’m taking steps to offset that, using the tools I have to keep steady and stay on track.

I really hate these kinds of situations. I have been through a lot of them in the past with my spouse. There’s been a lot of illness and struggle in both sides of our family over the 24 years we’ve been together, and we’ve spent more time than I care to think about in hospitals, waiting to hear news.

A part of me is selfishly feeling like it’s not fair that I have to leave my cushy new job situation, while it has that “new car smell” to go participate in unavoidable grief and sadness. I am finally getting into a groove at work, and now this happens. I have had a really challenging last few weeks, and no sooner do I feel like I’m settling in and getting things sorted, than I have to pick up and dash off to the kind of drama that I just hate. I stay away from my family because of all the drama. It’s just too much, and I’m feeling too tired to really deal well with this. Times like these are when I can get hurt.

Again.

But like I said, that’s me being selfish and not seeing the bigger picture. We need to extend ourselves for others and step up. That’s what makes our lives worthwhile and more than just an exercise in self-serving pettiness. That’s what my grandparent would have done.

My head is in a whirl, right now. I don’t like death, and I don’t like racing the clock. But here we are…

So, onward.

Off to the new office

We’ll see what’s inside…

Well, this is pleasant. I woke up early today, and now I have even more time, because I have a shorter commute. The pressure is off, job-wise.

Elsewhere in my life, things are heating up a bit. My last remaining grandparent, who is over 100 years of age, is in failing health, and my parents think they will not last long. This grandparent has been the single-most strongest presence and role model in my life, and I would probably not be here without their example. We haven’t always seen eye-to-eye, and there were many years when we kept each other at a distance, but that’s all behind us now.

Now there is only love and respect. Time heals.

So, I may have a trip ahead of me later this week. I have some critical deadlines looming, so I have to have a backup plan, for sure. I need to organize things and make sure they are in order, so I don’t miss the important dates coming up. I feel good about where I’m at, and how I’m handling things now. I’m getting the hang of the scheduling we do, and it’s falling into place.

I just needed to go through out, have some sketchy experiences to make sure it all sinks in, and keep going.

I’m seeing my neuropsych later today, also. I have prepared for the meeting, collecting notes from my past week, because for the life of me, I cannot seem to remember — when I get to their office — what I wanted to talk about. I’ve put together a list of topics that are all in my head and area all factoring into my life right now, to make up my whole experience. I’m hoping that will help them understand my situation better, because what I end up talking about is just a very small, small piece of the whole picture for me, and how can I get help with what is really challenging me, if I can’t articulate it.

I’m tired of being upset and frustrated over the whole process, and I’m concerned that they think I’m in a different “place” than I really am. It’s not that everything is awful, or that I’m debilitated or disabled. I just have certain things that are really intruding in my life, and I need to figure them out — clearly and plainly, not in a roundabout way.

So, there it is. We’ll see how it goes. I get a little tired of the disconnects between how I’m feeling, how I describe my experience, and what others interpret from it.

And I’m doing something about it.

Onward.

Where recovery happens

Writing has a way of getting me where I want to go

Reading “The Woman Who Changed Her Brain”, I have been thinking a lot about how I’ve managed to bounce back in my own life and rebuild / rewire my own brain. Life after TBI is absolutely strange. I haven’t recognized myself for years, and I thought for sure I was gone for good.

But I’m not. I’m still here. And I’m feeling more “back” than I thought I ever would or could.

So, where does that happen? How does it happen? I’ve gotten some great help from a neuropsych over the past 5 years or so, but to be honest, for all the progress they’ve seen me make, they probably don’t have a clue about what all goes on inside my head. How could they? When we talk, I feel so incredibly slow, and half the time, I can’t seem to get the words out that I want to say.

It. Is. So. Frustrating.

It’s maddening. But they don’t seem to understand that the things I want to say, aren’t getting through.

And then I become so frustrated with myself, so fed up and overwhelmed… that I just say what sounds good at the moment and keeps the pace moving. I sound quite confident, because I know how to project that. But inside, I feel like I’m dying.

Good grief. It’s really bad, some days, but I don’t have the heart (or the energy) to slow things down and make it clear that I am not really following, that I haven’t understood a word they said, and I’m sitting there nodding and looking all “with it” — without a clue about what we’re supposed to be talking about.

For someone who has always considered themself quick and sharp, this is pretty dispiriting. I mean, I’ve always had trouble understanding people, but I’ve never felt this slow before. I could always engage in witty banter, during my teen and adult years, before my TBI in 2004. After that, nothing was funny, and I couldn’t muster the quickness to parlay and banter about.

It just feels so slow. And I don’t know how to describe or explain it to my neuropsych. It bothers me so much, I want to cry. But I can’t cry with my neuropsych, because when I break down, I feel terrible and I have a hard time functioning. I get overwhelmed, and that’s no good, when my neuropsych is located 25 miles from my home. I have to be able to drive home.

I just don’t know what to do. Maybe I need to write them a letter and explain the situation. I’m not sure that will help. I’m not sure they’ll believe me. But something tells me I need to at least try. Draw them a picture. Something. I just need someone to witness in person the stuff I’m going through and understand … even if I don’t look like I’m struggling. Even if I’m covering it all up really well.

The thing is, I am recovering in so many ways, and that has really happened here – on this blog – where I can “speak” my mind and not worry about repercussions. Writing is so much easier for me than talking. Talking gets me turned around, and it’s hard for me to pay attention. I hate discussing things and “working them through” with people. So much gets lost in the translation. So much wasted. So much missed. I just give up after a while and let them think they’ve “won”. I can’t seem to keep up with the flow of conversation. I need a better way to communicate — at least with my neuropsych.

Eh… I’ll figure it out.

Or I won’t. And I’ll keep blogging, keep writing, and keep on with my recovery. Whether or not my neuropsych “gets it”.

Onward.

Hard-wired for success, failure, and everything in between?

We all have some sort of resilience within - I have to believe that

We all have some sort of resilience within – I have to believe that

I had an interesting discussion with my counselor last night. To be truthful, this individual has been very helpful to me, but they also have some severe limitations — such as their outlook on life. I was discussing resilience yesterday, asking aloud why it is that I’ve had so many situations where I had the bottom fall out from under me, yet I bounced back… when so many other people have less awful things happen, but they never fully recover.

Why is that? I think it’s a valid question that needs to be explored more fully.

My counselor told me that, after all they had seen while working for the state social services department for many years, they believed that some people are hard-wired for resilience. Some people had terrible things happen to them, and they recovered, while others did not. And they were just built that way.

Thinking about that, it’s probably one of the most depressing things I’ve ever heard. And it’s definitely “old school”, harking back to the days when people believed that you had what you had in terms of luck and life and cognitive ability, and that was that. Pretty antiquated, if you ask me. Of course, I wasn’t going to argue with someone who was working “in the system” for decades and is over 70 years old, and they have their perspective — their story — and they’re sticking with it.

I just can’t get on board.

See, I don’t think that’s true at all. I believe that people can change — they change all the time. And the people who are “stuck” have as much of a chance of getting “UNstuck” as the next person. Of course, there are going to be extreme cases, where dynamite wouldn’t dislodge them from their misfortunate mindset. But the vast majority of people have an inborn — IN-BORN — capacity to change.

Hell, we change all the time. We change our minds about things. We learn new things. We get bored by some things and drop them, and we get excited by other things and jump in feet-first. We make friends, we lose friends, we change jobs, we move around. We are in a constant state of flux and change at all times in our lives; we just normally don’t think about it, because change is really a regular part of our lives.

And then there’s the unanticipated change, that blindsides us and doesn’t make any sense to us in the grand scheme of how we understand our lives and ourselves.That takes some work, to get back. Sometimes we make it, sometimes we don’t. Sometimes we end up turning into someone we don’t recognize. But we do change. We can’t help it.

TBI is the kind of change that takes us by surprise. Nobody can probably EVER anticipate the changes that happen when the brain is rattled, shaken, and reshaped in subtle, miniscule ways. Recovery from that kind of hit is different from just about any other kind of change, because the very thing that’s the central controller has been impacted. Certainly, with cancer and chemo-brain and other kinds of injuries and illnesses which impact the brain as well as the body and spirit, you’ve got that brain stuff in the mix as well. The thing is, with TBI — especially with mild TBI — it’s so damn’ hard to figure out what the hell you’re supposed to do, how you’re supposed to do it, and understand what’s going on.

The thing that probably makes it different from other types of illness, is the hidden aspects. Absolutely, there are many people who are struggling with hidden illnesses, yet with TBI you’ve got the perfect storm of disconnects between where you’re hurt, how others perceive you, and how you can heal.

And yet, we can heal. I’m healing. I have my setbacks, my bad brain days, my times of going a little bit nuts over things that are bothering me in the back of my mind. But I’m healing. And overall, my situation is vastly improved over where I was, just a few years ago. Make no mistake, it’s taken constant work. It’s been exhausting. There are no “days off” in this process, but at the same time, quality recovery is practically impossible without some sort of rest and recuperation. It’s a balance.

And I wonder what it is that has made my recovery so much more… effective… than probably anyone would have guessed or anticipated. I know my neuropsych is kind of amazed at the recovery I’ve made, and how … functional… I am in my world. I’m engaged. I’m social. I’m involved. I’m out of debt for the first time in over 20 years. (I’m also usually exhausted, but that’s the price you pay, Oh, well. At least I’ve learned how to build it back up.)

I also wonder how it is that I’m able to bounce back from extremely dark times, and rebuild the way I do. Money problems. Marital problems. Health problems. Exhaustion. Work difficulties. Losses of friends and loved ones. Dark nights of the soul, when it seems nothing will ever get better, and I’m seriously wondering how much longer I have to keep on living. Ultimately, this all passes. And I’ve found that the more quickly I engage the darkness on its own terms, just letting myself feel as badly as I do, just letting things get as bad as they can, the more quickly I can bounce out of my sh*tass state of mind.

What makes that possible? What lets me do that? Is it just how I’m hard-wired? Is it just how I’m built?

I find it hard to believe that I’m just built that way, because in years past, I have been so down, so low, so desperately depressed, nothing could drag me out. For so many years in my childhood, youth, and adulthood, I was in an extremely low state of mind. And looking back at who I was, once upon a time, nobody — but nobody — would believe it was the same person.

And if the people around me were looking forward to right now, probably nobody would believe that I’m the same person that I once was.

Some say it’s all about character. I say, character can be learned. It can be taught. It can be modeled. And the fact that I’ve had so many positive role models in my life, whom I really respected and looked up to, I believe has had a huge impact on me and my life.

I wish I could write more about this, but I’m running out of steam.

Bottom line is, I don’t believe for a minute that people are truly hard-wired to be one way or another. We change. We change all the time. It’s how we’re built and what we do naturally. We just have to figure out how to change in directions that help us, rather than make us (and everyone around us) miserable.

Well, the day is waiting. It’s my last day at the old office, and it’s going to be a good one.

I don’t just know it will be — I’m going to make it that way.

St. Barbara of Arrowsmith-Young

Thanks for the help this past Sunday

So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation - you just need a free login.

Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.

One section in particular jumped out at me yesterday:

I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.

That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).

The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.

If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.

I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.

I need to check around to find out more.

Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.

What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.

Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.

Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,

Do the best you can each and every day…

Be honest with yourself about what’s going on…

Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…

Change what you can so you do better next time…

And share what you learn with others.

Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.

Speaking of which, I’ve got some chores to do.

Onward.

Amiss, but getting better

On second (or third) thought… no thanks

I’m scrapping the idea of going to the ER today. I stretched and moved yesterday, and I took a real break — spent the afternoon napping, reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain” (more on that later), and just puttering around the house, taking it easy. I’m going to mention the left-side weakness to my counselor, just so someone else knows about it. And I’m probably going to check in with my neuropsych on Wednesday. I do feel better, after taking some time off, and now the idea of embarking on a medical adventure doesn’t seem like a good use of energy.

Oh. My. God. When I think about having to explain my situation to doctors all over again… Yeah, no thanks.

So, a big shout-out to those of you who talked me back from that edge. I owe you.

It’s Monday. Only two more days in the office 20 miles from home. Then I move to the office 5 miles from home. It’s exciting. Also, I’m barrelling down the road towards a couple of big-big deadlines this week. That makes things easier.

It’s interesting — I’m gradually getting the hang of living by deadlines and holding people to them. In past situations I’ve worked in, there were two kinds of situations. Either

  1. The deadlines were fluid and there wasn’t a hard-and-fast rule about when things got done, and in what order. People were sort of lackadaisical about doing their jobs, and if it got done, then woo hoo. But if it didn’t get done, oh well.    Or
  2. Deadlines were in place, but everybody was a top-notch over-achiever who would have sooner cut off their left hand, than not do their job.

Now, everything is about the deadlines… but I don’t have a top-notch gang of over-achievers available to me, to get the job done. I have maybe one or two, who are usually overworked.

Sigh.

Well, it’s all very educational. Now I get to learn how to motivate people who have no real reason to be motivated at all. They don’t report directly to me, they aren’t all that thrilled about their jobs, and the burning desire to excel doesn’t seem to light up their days and nights.

Interesting.

So, now I get to learn how to make it all happen. And in the end, that’s going to be a valuable skill. I just have to acquire it.

I’ve got some more work to do on restoring a sense of self after TBI. I’m also restoring a sense of my own self — as much by slogging through the tough times, as experiencing the good times.

In a way, slogging through the tough times is even more useful to me than having everything go well. It shows me that I can do this thing, called adapting and overcoming. And it teaches me valuable skills along the way. I am extremely rigid and uncompromising in some ways, which can come in handy, when it has to do with personal integrity and delivering on my promises. When things come up to oppose my grand plans — as they invariably do — I can either buckle and fall to pieces (that sometimes happens), or I can learn from it and add to my overall knowledge and skill in handling those types of situations.

I choose the latter. And instead of tearing myself down — e.g., beating myself up for going off the deep end yesterday with the sensations I’m having on my left side — I can learn from the experience, chalk it up to, well, being human, and move on with a little more information under my belt.

And when I focus on learning and growing from experience, that builds up my feeling about who I am and how I handle myself.  Getting bogged down in despair and frustration is not how I want to be. It’s now how I understand myself to be. So, I have to find a better way. And recognize my limits — my tendency to go all catastrophic on things that happen with me — so I can keep them from taking over my life. I have limits, just like anyone else, and they are part of me — but only a PART of me, not all of me.

Having a broader sense of myself as a collection of many features and qualities, as well as a lot of strengths along with my weaknesses, makes all the difference in the world. I can’t gloss over the tricky parts, but I sure as hell can emphasize the cool stuff, and make the most of that.

Speaking of making the most of things, I need to really focus on getting into my day. It is SO HARD to get going for work, this morning. Mondays have been very difficult for me, lately. Transitioning into work and really getting invested, has been a monumental task. I dread everything about it, and I can’t seem to get into the day, no matter what I do. I know why, though. It’s old patterns from many years of bad experiences that are cropping up again, just at this point in time. Four months into just about every endeavor, this happens with me. Like clockwork. More on that later.

Anyway, the day is waiting, and I have a lot to get done today. Things are looking up, and that’s a good thing.

Onward.

I think something is amiss

It’s not usually this bad

A couple of months ago, I had several episodes that really threw me for a loop. I had a couple of meltdowns and it felt like something in my head “popped”, and then I was numb and dumb for a number of days after that. I thought maybe I was having a stroke, but it didn’t seem like I was having all the symptoms, so I thought maybe it was a migraine. It’s hard to tell with me — I have so many sensory issues in the course of every day, it’s hard for me to sort out the exceptions from the rules.

Over the past several weeks, I’ve had some “jumpiness” in my left cheek, and for several days, a spot on the left side of my upper lip was twitching like a Mexican jumping bean. It was driving me crazy, but it came and went, so I didn’t want to make a deal out of it. Then, last night, I realized that my left hand is more numb than my right – I can feel things and I can move it, and I don’t seem to have any loss of muscle strength, but it feels a little numb, and I don’t have the same level of sensation that I do in my right.

Also, I almost cut the tip of my left index finger off, last week, when I was fixing supper. For some reason (and I never do this), my finger was extended, and I almost didn’t stop myself, as I was bearing down. I cut most of the way through the nail – fortunately at an angle, so it didn’t go into the flesh under the nail. And it freaked me out, because A) I can’t afford to cut off the tip of my left index finger — I need it for working on the computer, which is my bread and butter, and B) it’s very unlike me to not keep my fingers away from the knife while I’m cutting. It’s been years since I had anything like this happen to me.

Then, this morning when I was putting on my socks, I could not raise my left leg up as high as my right one. I just didn’t have the strength. I know I have had different levels of strength in my left and right, and I haven’t been able to lift one knee higher than the other for some time, but I can’t remember if it’s been the right one or the left I have trouble with. And it’s weird how I keep misspelling things.

So, I think I may need to get checked out. The only problem is, I don’t trust the hospitals that are closest to me, and the one my PCP is affiliated with has really sh*tty neurologists. I have dealt with them in the past, and the one in particular treated me like I was hostile, they kept asking about my history of drug abuse, and they basically just went through the motions till they got me out of their office. I’m sure they’re not a total asshole, but that day, they did a great impression of one.

The other problem is that I have gone through whole batteries of tests over basically nothing — just stress. I get diminished when I am tired, and I have been extremely tired, lately. I’m just going-going-going all day, every day, and it’s caught up with me big-time. So, I don’t want to go crying “stroke!” when it’s really just stress and will get fixed with a lighter schedule, more sleep, and taking it easier than I have been.

Fortunately, tomorrow afternoon I’ve got an appointment with a counselor whose office is closer to a nearby city that has excellent hospitals, including the one where I had my MRI and got checked out for possible seizure activity, several years ago. They’ve got an MRI on record with me, as well as an EEG, so they’ll have a baseline and I won’t have to request records from other hospitals. I have my appointment with my counselor at 5, then I’ll discuss the situation with them, and if it really seems like I need to get checked out, I’ll drive the extra 45 minutes to get to the hospital in the city.

I’ll need to prepare for this — make sure I have everything with me that I need — including my work laptop and stuff from home. I’m packing a bag, just in case. And I’m also packing up my cubicle tomorrow, because we’re moving to the new office building on Tuesday evening, so I need to have it all ready to go, in case I’m not in the office on Tuesday.

I just need to prepare. And make sure that my spouse is all set, in case I need to stay overnight, or things run late. Maybe I’ll go get some extra food today, to have us covered.

I’ve got a headache, but that could be anything. I usually have a headache. No surprises there. And concentrating on the thought that something might be WRONG, is not helping me.

I’ll check with my counselor tomorrow. And I’ll see if I can get hold of my neuropsych, too. It’s really hard for me to tell what to do, and how best to do it. I have a lot of responsibilities, and I need to keep up with them, because people are counting on me. It’s almost impossible to tell what’s a product of anxiety and worry and being all stressed out with concern, and what’s the real deal, so while part of me wants to go to the ER and get checked out, I’ve been there a bunch of times over things, wasting precious hours amongst sick people. And when all was said and done, I was told, “Oh, it’s nothing. You can go home now.” I get sick and tired of being treated like I’m malingering or am overreacting. I literally don’t know if what I’m experiencing is a legitimate problem, or not. I have had a lot of neck problems over the past year, which affected sensations on the left side of my body, so maybe it’s just that. It’s hard to know. There’s a lot of competing information coming up in front of me all the time, so how do I sort it out?

Anyway, I think I have a plan. I’m still walking and talking reasonably okay (that slurred speech and sensation of a drooping cheek isn’t much fun, but it comes and goes). I’ll put everything in place for what needs to happen, should I need to go into the hospital. I’ll get myself coverage, and I’ll make sure things are lined up, so I can just take care of business.

Like paying my mortgage. For some reason, I had direct deposit set up for one bank account, but not for my house mortgage account. I discovered that yesterday, when I was checking my bank balances online. So, I’m late on my mortgage this month. Fortunately I’m not terribly late, to the point of getting “love notes” from the bank. I set up the monthly deposit to go into my account regularly, so that problem’s solved.

I also discovered that I have $8,000 more in the bank than I thought I did. That’s enough to keep me afloat, if something keeps me out of work for a few months. It’s amazing how much money you can save, when you don’t pay your mortgage ;) Of course, that $8,000 is all the money I have in the world for a safety net. Compared to the $400,000+ I used to have saved for retirement before my TBI in 2004, it’s sad. But it’s a hell of a lot more than I’ve had for a number of years. So, I am grateful for what I do have.

Oh, this is annoying. I can’t seem to spell. My hands keep typing the wrong letters. I need to take a long, hot shower, then lie down and get some rest. Take care of a few errands, then sleep for a few hours… or more. As much as I need. It’s Sunday. I’ve had my walk in the woods and my breakfast, and it’s turning out to be a perfect day for sleeping. Gray. Overcast. Drowsy. With a breeze blowing in the trees. Nice.

After I get some sleep, I’ll make my list. I’ll type up my symptoms from the past few months, and I’ll print out a copy, in case I need it tomorrow. Everything may be perfectly fine — just stress — but it’s not feeling fine, right now.

Whatever. Time for my nap.

Dropping like flies

I’m going through my list of sites on the right hand side of my blog. It seems that half of the folks stopped writing in 2011 and 2012, and there are some slim pickings of folks who have continued.

Dealing with TBI is a bitch – whether you’re the survivor or a supporter – and the fact that so many folks drop out of blogging after doing it for a year or so — probably to focus on living their lives — is testament to just how hard and all-consuming it can be.

I have to say, having blogged here since 2007, that it can be demanding. But getting out of your head and getting your thoughts on paper so you can check in with yourself and see how you’re really doing, is a commitment well worth making.

You get what you pay for.

A fresh new day

Get out there and make the most of it!

I’m feeling pretty good, this morning. I have the whole weekend ahead of me, and I feel much more focused than I have in a long time. I think the move to the new location at work is going to really help me. I will be close enough to home, that I can come home over lunchtime and take a quick nap. I think that’s going to make all the difference in the world. That, and not having to deal with long drives down the freeway in bad weather. This past week has been very tough, because the weather has been bad, and the traffic going to and from work has been pretty challenging.

In less than a week, that’s all going away, and I can live my life again. For the first time, really. I’ve never worked this close to home before, and it’s about damn’ time.

Also, in another couple of weeks, I can quit working from 7 a.m. till 8 p.m. (with intermittent breaks in between to do things like, oh, take a shower, drive to work, and grab a quick bite to eat). I’ve been working double-duty, fixing stuff that got broken, during my last couple of projects, making sure that people know what to do — and are doing it. Managing projects where cannot manage their own time and workload is no friggin’ fun, and that’s how it’s turned out to be.

Here, I thought that I could rely on others to do their jobs and finish up in good order. Untrue. They apparently only do what they’re hounded to do, and while I can do the “hound thing” (arf, arf, arf), it’s not my idea of a fun time.

Plus, the farther I get from the old world, where I was so totally stressed out about everything in my life, and the more I relax and come to my senses, the more I realize that I’m really not all that keen on working in technology or working for companies that produce stuff that people want, but do not need. There’s something about working for a company that provides a needed service (rather than luxury/consumer products and services) which really gets me going in the morning.

I used to have a job like that — I used to work in an industry like that. It was an indispensable line of work, and what we did was desperately needed — essential — for people’s lives.

Not so, nowadays. I’m managing projects that are all about stuff that people find cool and interesting, but isn’t critical to everyday life. And it feels like a bit of a waste, to be expending so much time and energy on frantically selling stuff that people could really live without.

At the same time, I’ve got to count my blessings. This job — once I get the hang of it — will be ultra-cushy, to be sure. It’s not rocket science, and since we’re not exactly dashing into danger and saving anyone from a fiery building, there’s less of the intense pressure I was under at my past employers. In my past “professional incarnation”, I worked for companies that actually kept people alive and made it possible for them to live longer, more productive lives. And there was no margin for error. Now, there’s plenty of margin for error.

People kind of wonder why I get so tweaked about things not going perfectly. It’s probably because of my past experience, where everything mattered so intensely. I just got used to working that way.

Nowadays, I can take the pressure off and relax a bit.

Although… that comes with its hazards. Now that I’m not all stressed out, I have the bandwidth to notice how I’m really doing. I’m not running from tyrannosaurus rexes anymore, so I have some time and energy to check in and notice how I’m doing. And in all honesty, it was easier in some ways, when I was stressed.

See, the thing is, all the stress and pressure and discomfort kept me “ON” — engaged, focused, and it kept my mind off the general sense of my life, which was not always that stellar. I didn’t have the time or energy to focus on how I really felt in my own skin, or how my overall system was operating. I had to just focus on putting one foot in front of the other and keeping a fine balance to everything, because I never knew if I was coming or going, there was so much chaos going on inside my head and body all the time, and I couldn’t afford to lose focus… or else.

All that chaos was a bit of a blessing, because it kept my mind off all the confusion, the frustration, the pain, the discomfort… all of it.

Now that things are calming down, I’m noticing the things I didn’t have time to think about before. Like the fact that I’m approaching 50, with a spouse who is basically disabled and is a number of years older than me, and we have no retirement fund. Nothing. Nada. Zilch. We need to make some significant house repairs, and we are just now getting close to being able to pay someone to do the work. I’m working, yes, but I have no disability insurance, and without a safety net, we’re living kind of close to the bone.

We’re getting by, and we do have a pretty sweet life, all in all, and we have a lot to be grateful for, yet there are significant ways we’re at risk, and it’s no fun thinking about “what might happen”.

I’ve been so busy, just keeping it together, that I haven’t dwelled on that very much. I’ve been too busy just keeping myself upright and functional.  I haven’t focused on the pain I’m in, I haven’t had time to deal with headaches, other than getting acupuncture and stretching and not eating a lot of crap. I haven’t had time to focus on the weird sensations in my face, the twitching and jumping. It’s all nerves, most likely, so I just keep going. If it weren’t nerves – if it were something else – I’m not sure I’d have the time and energy and resources to really explore all my options.

Now, though, things feel like they’re closing in on me, because I have time to think about them – and I’m not liking what I’m seeing. Or feeling. It’s depressing.

So, screw all that, I’m going to get myself busy again. On things that I want to be busy on — writing books, getting out in the day to have my walks and explorations, taking care of chores and odd jobs (like getting my cars inspected — I overlooked the fact that they were both due for their stickers, two months ago — just got busy, I guess). And just live my life. Get into my life, see what’s there, and use this fine new day for what it’s worth.

There is so much screwed up in my life right now, so much that feels weird and strange and trying… It’s been that way for a long time, but I’ve been so stressed out, I haven’t had the bandwidth to really address any of it. Now I’ve got the time. Maybe I’ll be able to address some of it. Maybe I’ll just end up keeping busy instead, because trying to hang onto the horns of the bucking bull that is my life, is a losing proposition.

We all have our challenges, we all have sh*t we need to deal with. I’m no exception.

Now I need to learn to handle the good times as well as I’ve learned to handle the bad.

And with that, it’s time for a walk. It’s turning out to be a beautiful day.

 

 

 

Oh, hell – I’m just posting it all

Restoring your Sense Of Self after a traumatic brain injury is no small feat.

And you need all the help and support you can get.

So, while I work on my book, I’m going to be posting chapters to this blog, and making them available to people for free here – at TBI S.O.S.

Life is tough enough after TBI, to have to fork out dough on top of it.

I’m going to be making the work available in print and ebook later on, when it’s done. But this way, I can keep up the momentum, and also get the words out there. Somehow, what I write sometimes makes more sense to me — and I get valuable distance from it — when I see it online.

Strange. I used to be such a solitary. Still am, really. I just got hooked on the whole online publishing experience, I guess.

Later on, for those who want to support this blog and my work here, you’ll be able to buy print and ebook versions. But for now, I’ll just post what I’m writing, and let that speak for itself.