A few positive steps, some Marcus Aurelius quotes, and I’m good to go

"The happiness of your life depends upon the quality of your thoughts" - Marcus Aurelius
“The happiness of your life depends upon the quality of your thoughts” – Marcus Aurelius

I got a good night’s rest, last night. Not as much sleep as I was hoping to get, but at least it was something. I’ll take a nap later today, when I am done with my volunteering… before I start the next “leg” of my day’s activity.

Life is filling up again for me, and in a good way. For a long time, my weekends were all about serious downtime – I am pretty much done by the end of the week, and Thursdays and Fridays are often a “wash” for me, as I muddle through the final 48 hours of exhaustion before my weekend.

But this weekend, I’ve got a lot going on – especially with the house. My spouse and I walked through our downstairs, yesterday evening, and figure out what we want to do with all stuff we’ve accumulated over the past couple of years. We both have executive functioning issues, having trouble with initiating activities, figuring out next steps, and following through. So, we end up with a lot of stuff stacked in piles, waiting for us to figure out what we’re going to do with it.

We’re not dirty. Just disorganized. And last night, we started doing something about it. We figured out what we need to do with the living room, so we can actually sit in that room again and read quietly in peace. It’s the quietest room in the house, and perhaps the most comfortable, but it’s not where the computer and the t.v. are, so we don’t spend much time there.

We also figured out what to do  with the dining room. We don’t actually use it for dining, much — we eat in the kitchen or in front of the t.v. at night — and we haven’t had company over for months and months (maybe years). So, we rarely use it, except for like right now, when I’m sitting down to write and drink my morning coffee. It’s become the place where I work while I’m waiting for supper to cook. I can hear it, if the food on the stove starts to boil over, and I can get to it much quicker than upstairs. My spouse used to keep an ear out for any spills on the stove, while working in the next room, but they’ve not been able to do that as well, in the past couple of years, so now I write and work in the dining room, while they’re working in the great room next to the kitchen.

Also, that great room — the one with the nice view of the western sunset and the fireplace, which is our sanctuary, the main place we “live” in the house — that’s slated for some changes. We have been talking about doing things with that room for quite some time, but we never seem to get moving on it. Well, now we are. We’ve got a plan. And today after I volunteer, I’ll be stopping by the local home improvement center to pick up some containers to store our stuff… and move it out of our living space.

I also need to move some stuff we’ve been storing in the dining room to where it really should be — the attic, as well as the garage. I did a massive re-org of the basement, a little over a year ago, which helps, and now it needs to continue as Phase II. Or III. Or whatever number we’re up to, by now. There’s stuff I can also move from the basement to the attic. The attic gets cold in winter and hot in the summer, so whatever I put there has to weather those elements. I’ve got some stuff I can move there.

I’m also considering getting rid of that old bicycle I have in the basement. It’s not a very good one. It has a wobbly wheel, and it might not actually be that safe to ride. It’s also a three-speed, and you can probably guess how that goes, when I’m out riding up and down hills on that thing. I may keep it around, because it reminds me of my Dad’s old bike, and it also harks back to days gone by when our needs were so much simpler.

I just need to move it somewhere that makes more sense. Maybe get some of those hooks and hang it from the rafters in the basement.

Anyway, the long and the short of it is, I’m feeling a whole lot better now than I was yesterday.

Just getting moving and doing something useful with myself — getting active, breaking up the rut I can fall into — and not getting so stuck in my head… that seems to be the key with me. Just taking action. And also getting my spouse in on the action. We both need to keep active and engaged, and we both need to live in a house that’s comfortable. I work so hard, each and every day, to keep this house and have a good life here. Why not make the most of it?

I lucked out, this morning, as I was surfing the web while riding my exercise bike. I stumbled upon some Marcus Aurelius quotes, which always bring me back to my senses. I have always really liked his “Meditations” – which you can read for free here at Project Gutenberg. Some of his language is hard to decipher, but there’s enough good in there, that it makes it worth it to sort through.

Marcus Aurelius was a Stoic Roman Emperor – and Stocism is about being able to be truly happy, when all the rest of the world is falling down around your ears. It’s not about “sucking it up” and squelching all your unhappiness down inside you, but rather getting used to life sucking big-time and being happy in spite of it. Regardless. Recognizing the pain and discomfort and difficulty, but not letting it wreck your life. That’s my kind of philosophy.

I’ve always been a Stoic, at heart — from when I was a kid, training myself to not cry or show emotion or get caught up in feeling sorry for myself, when I got hurt. In many ways, that worked against me, especially because it kept others from seeing my difficulties, so I couldn’t get any help. But my shortcomings in how I practiced Stoicism were because I was a kid, and I had a child’s understanding of it.

Now I have an adult’s understanding, and with everything happening around me, lately, it’s important that I use that understanding again. I have come back to Stoicism, time and again, but I always seem to lose track of it… just forget about it. I lose track of things, if they aren’t right in front of me, and that’s a problem. So, I think what I’ll do is actually make a little booklet of them and carry them with me to read. I can do that by saving a document as a PDF and then printing it out. Or, I might just pick a quote to think about for a day or a week, or longer. I have quotes saved to my desktop, so I can look at them anytime.

I really need to get more down-to-earth, as well as not let things bother me, so the words of a long-gone Stoic seem about right to me. I think they can be helpful for others, too, so I’ll write more about Stoicism here, in hopes it will help others be happy, no matter what’s going on.

A lot’s going on in the world that’s just awful. Terrible. Painful. Small children being killed, each and every day, in a war that makes no sense to me. Some wars make sense, but the whole Syria thing… I just don’t know. Anyway, I don’t want to get political here, just say that I see the pain and the suffering, and I wish – how I wish – it would stop.

In the meantime, I can take care of my own state of mind and not let myself be hobbled by all that other stuff. I’m not turning a blind eye to it. Far from it. I’m just also taking care of myself, in the process. And being happy, despite everything falling down around me and being excruciatingly painful, is the kind of skill I need to develop. Because things aren’t going to get any easier, anytime soon.

Ah, well.

Onward…

Good to be back to my routine

clock on the side of a building with skyscrapers in the background
Keeping on schedule makes my life manageable

It’s good to be back to my regular life. As much as I like vacations (especially ones that involve nice weather and the beach), I really love my daily routine. It centers and grounds me, and it keeps me sharp… because I don’t have to figure everything out as I go along.

It’s predictable. It’s familiar. I can do it (metaphorically) with my eyes closed and my hands tied behind my back. I complain sometimes about feeling so trapped in my routine and daily rut, but it’s actually the thing that keeps me stable and chilled out.

My vacation was actually pretty stressful, in some ways. I wasn’t on my usual schedule of getting up, riding the exercise bike, eating my scrambled egg, then settling down with my coffee and banana to blog or read or chat online with friends there. There was no getting ready for work, driving down the road and thinking about things or listening to music, and then spending a day in my cubicle working on data “stuff”. It was more “free-flowing”, with my spouse not feeling very well and needing some sort of attention on a regular basis.

I had hoped to spend some quality time thinking and working on some of my projects, but that didn’t happen. My spouse was not only sick, but also very anxious. About everything. And that put us both on edge. I got pretty resentful at times, especially when I was interrupted in mid-thought. But I kept it together and did not snap out more than a few times.

I did break down in private, mid-way through the week. I just felt like I couldn’t take it anymore — the constant barrage of needs and demands and having to jump up and change gears at a moment’s notice. I was really, really tired, and I wasn’t getting enough sleep. It’s hard for me to sleep in other people’s beds, in rooms without blackout curtains. I had a sleep mask and earplugs, but it wasn’t the same. And it was either too hot or too cold in my bedroom, so that was hard, too.

Still and all, it was a good break. And it taught me a lot about myself, as well. I need to take really good care of myself, especially as I’m caretaking for a spouse who’s declining in terms of cognition and behavior. They’re getting on in years, and it’s finally catching up with them. We’re a generation apart, actually — and up until the past few years, it’s worked in our favor. I’ve always been attracted to older partners, and I’ve always been mature for my age, so it’s never been a problem. But when your partner starts to get “up there” in years… starting to seem downright elderly… and you’re just entering your real prime of life, well, that’s a complicated path to tread.

It’s a management issue, really. I need to manage myself more effectively and do a better job with my own self-care. It’s like I’m a vehicle pulling a very large wagon, and I need to keep my engine tuned and my gas tank filled, so I can do a decent job at this caretaking business.

Because it’s not going to get any easier for me — or for my spouse.

And the task at hand is for me to keep my act together, so we don’t both suffer. When I don’t keep my act together — don’t get enough rest, don’t eat right, don’t exercise, don’t manage my emotional state, don’t manage my behavior — and I just let everything go, because I’m tired of dealing with it, that’s not good. It makes everything worse for everyone involved. And then I need to pick up the pieces and patch things back together again.

If I can.

Some people have told me I need to cut my spouse loose. They told me that, back in 2007, when they were first having a big set of neurological problems. They told me I needed to leave. Get on with my life.  Put them in a home (?!). Not let their situation hold me back.

Needless to say, I did not do any of that. And I was really offended that they would suggest that as an option. As if I were the sort of person who just gives up on other people. I don’t. Especially my spouse, whom I love with all my heart, and is every bit as much a part of my life as my arms or legs or brain.

I’m not giving up. It’s not going to be easy, and none of us will get out of this alive. But for the time being, I’m sticking with it, hanging in there. and I’m putting the focus on taking care of myself, so I can do the best job possible as protector and provider for the amazing, beautiful life we have together.

That’s that. End of discussion.

Which means I need to take care of myself with routine, schedule, and doing as much as I can to keep my foundation stable. Life will throw what it will at us. It’s our choice, what we do with it. And I choose to move forward to the best of my God-given ability.

Onward…

Step by step… putting things in order

files and papers stacked in two columns
This is much more organized than I am … or may ever be

I had a full and busy weekend. There was a bunch of stuff I had to do for work on Saturday, since I was out all last week. And yesterday was about just getting myself back in the swing of things. Cleaning up, organizing, putting stuff back where it belongs. And getting some rest.

I got a good nap in the afternoon, and I also got a lot handled for some of my projects I’m working on. I also caught up on my correspondence – I still need to call my parents back, though. They called before I was leaving to go out of town, and I didn’t feel comfortable calling them, because they had wanted to go on a week-long vacation with me and my spouse, and we told them, “NO” because I didn’t have any extra vacation time… because we were already taking a week on our own. My parents get jealous and hurt, so rather than let them down (or lie to them, which is extremely difficult for me), I just didn’t call them back.

I’ll need to do that sometime this week. And talk about fall house repairs. Because that’s what I’m up to, these days.

I feel pretty good about the few things I did on Sunday morning. I cleaned a little bit, and I reorganized a room we use for storing stuff my spouse uses for their business. I also did some research on storage units, and I found a facility that’s a few miles from my home that has some good deals. I need to stop by their location on my way to work, sometime this week, and check out what they’ve got.

I also need to organize my workspace in my own study. It looks like a bomb went off. But it’s a happy, creative bomb. Still, I need to move things around and make a larger space for myself to move. I have trouble remembering that things exist, if I don’t see them in front of me, so there’s always the danger of losing track of important ideas because they’re hidden from view after I organize. I need to figure out how to handle that.

This is all a process, of course… A big, long process that never actually ends. The good thing is, it’s very satisfying for me, so I don’t mind it terribly. It’s just a constant thing, that I need to keep up with.

But when I do keep up with it, it feels great! So, that’s what I’ll do. Simply keep at it, steady on…

Steadily… 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

 

Easy does it… sometimes, but not all

construction site nighttime scene cranes and lights
Downtime is time for me to get to work – Photo Credit: Pixabay

Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.

I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.

My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.

I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.

I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.

There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background  or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.

If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.

We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?

Why not indeed?

Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.

I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.

Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.

It was a boon in disguise.

I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.

And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.

And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.

So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.

I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.

So… onward.

Beyond the Invisible – TBI Video for and about Military Veterans

I just learned about a 4-part series about TBI from the Brain Injury Association of NY Military Veterans Project. Check it out – it’s great!

Beyond the Invisible

Part 1 http://www.youtube.com/watch?v=G5eWersQdRw&feature=related

Part 2 http://www.youtube.com/watch?v=TwsGzRLTRqY&feature=related

Part 3 http://www.youtube.com/watch?v=ADC93aoVkP8&feature=related

Part 4 http://www.youtube.com/watch?v=7QBnACJ7eAQ&feature=related

TBI Symptoms – Common Cognitive Dysfunction

I’m really enjoying reading Neuropsychological Rehabilitation by George Prigatano, which I recently got from the library. It may sound strange, but I’m into it.

On pp 4-5, under Common Cognitive Dysfunctions and Their Psychosocial Outcomes, the following issues/disorders are listed (in slightly paraphrased form, so I don’t provoke the gods of intellectual property):

Attention/Concentration Disorders:

  • Having trouble sustaining attention
  • Getting fatigued easily
  • Impairment of selective scanning and attention
  • Poor ability to shift attention back and forth — so you “get lost” a lot in group conversations

Problems with Initiation and Planning of Goal-Oriented Activities

  • Abstract attitude impairment: you frequently miss the point of what’s being considered and take information literally, instead of symbolically
  • Problems with taking action impulsively before it’s required, or keeping going after you should stop taking a certain action
  • Slow initiation time
  • Getting confused about where to start with problem-solving, and therefore ending up with problem-solving strategies that aren’t very realistic
  • Trouble ordering/sequencing info
  • Trouble knowing where, when, and/or how to ask for help
  • Difficulty learning from your mistakes — and your successes

Judgment and Perception Problems

  • Misinterpreting the intentions and/or actions of others
  • Getting confused when presented with a bunch of information at the same time
  • Having a tendency to be socially inappropriate when talking to people
  • Being unrealistic when appraising yourself and your strengths and weaknesses after head injury

Learning and Memory Disorders

  • Lousy rote learning
  • Trouble organizing/processing information that you really need to remember — especially when related to work or academic activities
  • Memory deficits that are material-specific (for example, having trouble with non-verbal vs. verbal information, and vice versa)
  • Having memory problems that are below your IQ level

Speed of Information Processing Disorders

  • Reeeeeaaaaallllllyyyyy   ssssslllloooooowwwww  rrrreeeeeeaaaaaccccttttttiiiiiioooooonnnnnnnnn   tttttttiiiiiimmmmmmeeeee (that is, really show reaction time)
  • Talking, writing, and doing mechanical tasks are slowed down

Communication Disorders

  • Trouble remembering words
  • Trouble finding the right words
  • Going off on tangents when talking and thinking
  • Being talkative
  • Using peculiar phrases and words
  • Uninhibited word choice (e.g. four-letter words) in conversation

According to Prigatano and Fordyce, “these disturbances exist in most, if not all, traumatically brain-injured young adults.”

I know they certainly exist with me. And while reading this list is a bit disconcerting, it’s also very comforting to know I’m not alone. And it explains a whole lot.

In the following pages after the list, Prigatano and Fordyce go into brief descriptions of the different types of disorders and talk about how they still have a long way to go before adequate rehab techniques are developed for them. This book is dated 1986, so I am hoping this has changed in the past 23 years, but you never know.

In any case, even if the book is older, it still has valuable information. And if I’m thinking about the timeframes correctly, it was written before the rush to create and market TBI rehab programs picked up steam. So it’s more likely (at least in my estimation) to have unbiased info.

Unsullied, as it were, by its own success.

Or somesuch.

Or maybe it’s my misinterpretation of the actions and/or intentions of others that’s getting me into trouble 😉

Anyway, I’m still reading…  It’s taken me several days to get through 7 pages. I read through them, then back up and re-read… then back up again and re-read… I think I’ve got more of it in my head, now. At least I have it written down 😉

My books have arrived from the library!

I’m really stoked. I finally managed to find a library copy of George Prigatano’s Neuropsychological Rehabilitation After Brain Injury and Prigatano & Schacter’s Awareness of Deficit After Brain Injury.

I’m sure it sounds odd for me to be so excited about getting them from the library, but these are books I’ve been wanting to read for some time. I first came across George Prigatano a little over a year ago, when I was researching brain injury and wondering why in heaven’s name I had never realized there was something “up” with me. I mean, I had a lot of problems when I was a kid and throughout my adulthood. Problems with memory, problems with mood issues, problems with keeping track of stuff, problems with temper, problems with freaking out over every little thing, problems with money management… I get tired just thinking about it all.

I should have realized a long time ago, that all those problems couldn’t possibly have been due to everyone/everything else. Something had to be “up” with me. But no… my broken brain was convinced it was everybody else, not me, that had the problem(s).

Anyway, now I’ve got the books on loan for three weeks — and the past-due fees are high, so I’d better get reading. I’m sure it’s considered a little “blasphemous” and presumptuous for me to be reading up on cognitive rehabilitation and advanced topics that are supposed to be beyond this layman’s brain, but I don’t really care what other people have to say about it. I have access to the information, and even if I don’t understand everything, at least I’m going to check it out.

My wrists are doing a little better. I’ve worked almost 30 hours in the last 2 days, much of that time spent typing, so I still have more resting I need to do. But that will come. Right now, I want to celebrate.

Celebrate life. Celebrate recovery. Celebrate cognitive rehabilitation. I saw my “neuroshrink” today, and we actually had a really good session. I was talking about different events of my past, and I actually got a laugh out of them. A good, hearty, spontaneous laugh, too. In the past, they’ve been kind of reserved and distant, like they were checking me out… not sure if they were going to keep working with me. But today was a good session.

They told me, in the course of our 50 minutes, that considering everything that’s happened to me, my life is a great triumph, not a tragedy. And yes, it’s true! My life is a tremendous triumph, and I’m feeling really grateful tonight that I’ve been able to do as well as I have.

How I’ve been able to do this well — bounce back from multiple mild tbi’s, including sports concussions and falls and assaults and car accidents, and build a life that’s full of activity and love and productivity and, well, happiness… I’m still trying to figure it out.

But if I had to chalk it up to anything, I’d say it’s just stick-to-it-ive-ness. Never giving up. Being tenacious. Stubborn. Hard-headed in the right ways. Trying and trying and trying some more. And never settling for less than I want — and deserve.

Just keeping going… in some ways, that’s the best rehabilitation of all. None of the other approaches actually work that well over the long term, if you don’t have this as the foundation.

But still, tenacity aside, it’ll be good to check out these books. It’ll be good to have some input that comes from outside my own head and immediate experience.

I’m also looking forward to reading more writing from George Prigatano. I have been a huge fan of his for quite some time, and what I’ve read from him I’ve really enjoyed. It might sound odd to talk that way about a neurologist, but everybody’s partial to something. Some folks are into Japanese art, some are into road bikes, some are into Turkish ceramics, some are into Dice-K, some are into the Cavs. I’m into neuroscience. Particularly cognitive rehabilitation after brain injury, and all the fascinating aspects of life that go with it.

And I do mean “fascinating”. The brain really is the final frontier, and despite the fact that everyone has one and we all love to talk about ourselves, precious few of us — scientists and doctors, included — seem inclined to talk about our brains and the way they impact our lives. It’s as though there’s this huge curtain drawn between our white/gray matter and the rest of us… a kind of holy-of-holies veil that keeps us from approaching the Ineffable Massiveness of what sits atop our shoulders and between our ears. I can’t account for the reticence, in general. It’s like everyone is running around talking about everything except their brains… like we’re trying to keep our minds off it.

Or maybe it’s just so close to home that it makes people waaaaay too nervous to approach, and anyway, we’re taught that unless we have degrees and qualifications, who are we to discuss such weighty matters? It puzzles me. We all have brains. We all love to obsess about ourselves and our human conditions. Yet we’ll invest countless hours in dissecting the life choices of Octomom, while remaining oblivious to the Real Drama that takes place inside our skulls, each moment of every day.

I can’t account for it. But it’s getting late, I need to rest, and there will be more time tomorrow to ponder these imponderables. And read the words of  George Prigatano.

When TBI help is not helping

I’ve been thinking a lot, lately, about how I never got any diagnosis, rehab or therapy help for my MTBI’s (until the past year or so), and how that has affected my life. I’ve been seeing a therapist who is a neuropsychologist, as well as a diagnostic neuropsychologist who has helped me understand a great deal more about how my TBIs have affected not only my brain by the rest of my life, as well. And it’s great to be getting this help — and to be able to talk to friends and family members about my TBIs in ways that are helpful and actually informed.

But I have to wonder if maybe one of the reasons I’ve been able to function as well as I have (in certain ways) is because I’ve gotten next to no “TBI help” from people in my life. Nobody ever recognized (as far as I could tell) that being knocked out, falling down stairs, and/or being hit on the head a bunch of times, could have as big an impact on my cognitive and behavioral expressions as it did. Nobody ever approached me as someone with special needs who needed special attention, and whose needs should be accommodated.

To be clear, I had a lot of problems when I was a kid. The falls and sports concussions and the attack that knocked me out when I was eight appear to have skewed my behavior to the extreme, and I was pretty tough to handle at times. But all through my childhood, difficult as it was, I was never cognizant of having “problems”. I thought it was everyone else who had the problems, not me. I didn’t perceive myself as being different — in part because my parents never treated me like I was different, just difficult… in part because I think my perception was so anosognosic (I had no clue that I had no clue what was going on) that I couldn’t self-assess and self-regulate at all.

Granted, it’s no fun growing up being told that you’re lazy and a bad seed and that you’re just not trying hard enough.  It’s no fun having all the authority figures in your life yell at you, make fun of you, chastise you in public, discipline you, and generally hound you to do things you have a really hard time doing (if you can do them at all). But all the messages from my childhood that I internalized that took a toll on my self-esteem, as an adult, I can nowadays reason my way past them and reverse their impact simply by understanding that they just weren’t true.

Now, if I had grown up with the belief that I was damaged, broken, deficient… and that there was nothing to be done about it, other than compensate and make concessions and get special treatment from the powers that be, I think that might have taken an even greater toll on me. Because it would have been true. Irrefutable. Definitive. Sort of. I could totally see myself falling into this state of resignation over my broken brain and just never having any hope of building a real life for myself. I might have given up and become even more marginal than I was — not because the rest of the world didn’t understand me and my mind was having trouble wrapping itself around its difficulties, but because my spirit would have probably been broken, and I would have ushered myself to the margins and just been glad for what little I could get from life… hiding in the corner and sneaking out when no one was looking to gather crumbs that fell off the proverbial table.

I think, too, never having an explanation for why everything was so damned difficult for me all the time, actually helped me. It didn’t give me a reason to quit trying. All around me, throughout my life, people with expectations were giving up on me. Parents. Teachers. Grandparents. Aunts and uncles. Neighbors. Cousins. Just about anyone who had expectations of me had them dashed in short order. No matter how hard I tried, I just couldn’t seem to get it right. But I didn’t have a reason to stop trying. I was never told, “You’ve been injured — permanently — so why bother?” I was never “reassured” that it was okay to fail. I was encouraged to go easy by some people who lost faith in me, but I never gave up on myself, and I never lost faith that somehow, some way, I would figure out how to get done what I set out to do.

I just wasn’t giving up. I didn’t have any tools given to me, that I can recall, other than try-try-again, and I had to come up with a lot of systems of my own, but I did try-try-again and I did come up with systems. And somehow, some way, I did manage to build a pretty impressive life — and resume — in the process.  It’s been a long, tough row to hoe, and I’ve been knocked down more often than I care to think about, without people offering me a hand up. But you know what? I can bounce. That’s what I do. I bounce. I’m like one of those Weebles. I wobble, but I don’t fall down — permanently. Sure, my self-esteem is for crap, a lot of times, and I automatically disqualify myself from activities I messed up as a kid, which I could probably do now that I’m grown. But I’ve figured out how to keep moving, keep progressing, keep advancing… even in the total, utter absence of self-esteeem.

Surprisingly (compared to what I hear said all the time), you don’t actually require ironclad self-esteem to get stuff done in the world. In some ways, having severe self-doubts and low self-regard can keep you honest and working hard.

Now, I would imagine that TBI folks who receive formal rehab and are given tools to use to get by in life may have a more pronounced sense of ability because they receive guidance and training and rehab therapy that is meant to reassure them that they can do what they set out to do, and is designed to return them to functionality. And when they bump up against the upper limits of their capabilities, it may come as a surprise. I think that would be even more upsetting for me than not realizing you have problems, and encountering problems, time after time. I think that would eventually take a huge toll on my spirit. I would think, I’ve been shown strategies and given tools. Why aren’t they working? What’s wrong with me? Am I really that messed up? Why am I not getting better?

I wouldn’t know exactly what it’s like, because I’ve never had real rehab or occupational/speech therapy. But if I were getting rehab therapy, I would probably be inclined to push the envelope of my abilities, and I’d probably fall flat or run out of steam over and over and over again — and be really pissed off that things got mucked up. I should be rehabbed, right? That’s just me. I don’t know if others experience that, as well, but knowing myself and my tendencies, that’s probably where I’d be.

Another thing that I think might happen with people who get rehab and whose friends and families know about their head injury, is that they get moral support and encouragement from their various relationships, but when they muck up, they get that subtle (and often unarticulated) message that it’s okay for them to be less functional than they’d like to be, ’cause they’re brain-injured. So, they shouldn’t feel so bad about it. And maybe they shouldn’t try so hard… maybe they should just accept themselves as they are and settle into the kind of life that has been given them, rather than the kind of life they want to create.

I notice that happening in my immediate circle, where people close to me who know about my head injuries are trying to be loving and gentle, but they end up.. well, “emasculating” me in the process of my “journey towards wholeness”. I mean, it’s all very well and good for them to care enough about me to reassure me that I’m still a good person who has value, but it’s not helpful for me for them to downplay the importance of trying to do my best. It’s not helpful for me to have expectations lowered, and accept failure as a given. I’m still a work in progress, and there’s no telling how far I can go in life, given the right tools, the right approach, the right form, the right level of effort. But all too often, my circle of supportive friends and family seem to settle for accepting me as I am, which also includes accepting my screw-ups as being okay.

I wish they wouldn’t do that. I’ve got to have a talk with them about what I would like them to do.

For me, so much of doing well in life is not so much about innate ability, as it is about spirit and determination to develop what ability I have into something more. I think that’s something people lose sight of — especially later in life when full-grown adults (like me — I’ve got a birthday coming up, and I’m getting closer to 50 than 40 — when did that happen?) — are starting to wind down a lot of their activities and/or they’re accustomed to working with a set of abilities that they’ve honed over the years, but haven’t really worked at keeping up. And they figure they can just draw on what they’ve accumulated in the past.

For me, no matter how old I am or how much older I’m getting (and I’m damned lucky to be getting older, lest I forget how many close calls I’ve had in the past), I am not in a position where I can just slack off and accept things for what they are. If the rest of the world wants to retire and fade away, I’m not going to stop them. If the rest of my peers are going to quit improving and honing their abilities and making as much as they can of what talents and interests they have, I’m not going to stand in their way. But for me, I have to keep moving, keep improving, keep at it. And I have to not take any of my “innate” abilities for granted.

Doing that is inviting disaster.

That being said, I really think people need to be reminded that none of us has any guarantees in life, and freedom is never free. It’s entirely up to us, what we choose to do with our talents and interests and abilities, as well as our injuries and setbacks. Just because you have experienced an injury does not mean you’re any less able to improve than anyone else. Or that you are entitled to work any less hard. If anything, you have to work harder — but remember, that hard work can really pay off. No, there are no guarantees, and you may end up expending a lot of effort for what seems like a relatively small pay-off, but if you take delight in the discipline of the work itself, and you get something out of just having at it with all your might, then the outcome — while important — does not become the be-all-to-end-all.

And the work itself becomes its own reward… As well as all the perks you get from building your character and inner strength while working your everloving ass off.

But it’s still work. And to do your best, you have to keep your spirits up. And to keep your spirits up, you need to not be constantly reminded that you’re less-than (’cause the doctor said so), or that you’re disabled (because the insurance company said so), or that you’re any less deserving of your place at the table in life. You need pep talks and coaxing of all kinds — gentle as well as matter-of-fact. You need supporters who support the person you can become, not just the person you appear to be at the moment. You need backers who are realistic and optimistic at the same time — not out of some pie-in-the-sky Pollyanna BS, but because they know for a fact that the human experience is a deep, deep mystery full of ups and downs and twists and turns and wrinkles and Burmese tiger traps, but what good is life, if you’re just going to sit on the sidelines and cry boo-hoo?

So, it’s hard. This is news?

Okay, okay… I understand the necessity of grasping limitations, but at some point, if you’re going to have a life, you have to grasp all the harder at the things you have going for you, the things that make you a viable human being, your positive qualities and strengths that enable you to see past your limitations… and even turn them around in your favor. No, I’m not really that pleased that I’m at an age when I “should” be able to settle into a comfortable routine and rest on laurels I started growing 25 years ago. No, I’m not thrilled that when my peers are being promoted into higher and higher positions and paying off their mortgages and starting to have grandchildren, I’m still struggling with the basics, like remembering whether or not I’ve shampooed my hair this morning. I’m not at all giddy about the prospect of having to keep lists of really simple crap I have to do for the rest of my born days, in order to get anything done. I would like to be able to kick back and enjoy myself after all these long, arduous years.

But y’know what? That’s not going to happen. Not if I want to have any kind of a life. And it does me no good to sit around boo-hoo’ing about it.

So, what’s the story I want to tell myself today about my life, to get me in gear and make peace with the hand(s) I’ve been dealt? I think about my ancestors, some of the first pioneers who were “sodbusters” in the Great Plains several generations ago. Okay, I don’t agree with them displacing the Native tribes on that land or tearing up the prairie grass that kept the topsoil from blowing away and ending up in the Mississippi, but there’s a quality to their experience and their characters that I need to access for my own purposes.

I come from pioneering stock. The hunger for the frontier is in my bones. My great-great grandparents didn’t cry and moan about having to trek to the outhouse in -40 degree weather and thigh-deep snow to relieve themselves, and they didn’t whine about having to clean up with rough corncobs and Sears catalogs. That’s just how it was. It was the price they paid for the chance to live on the frontier and make their mark and be free to do as they pleased.

They didn’t fuss and fret about tending to wounds without a doctor nearby. They didn’t wallow in self-pity when the grasshoppers devoured their whole harvest. They didn’t freak out when life didn’t work out the way they wanted. They buckled down and did something about it. Or they accepted what was, and they worked at dealing better with it all next time.

In this age of junk food, convenience stores, cheap furniture, easy access to worlds of information, trained professionals whose services are paid for by insurance, and more and more tools to figure out how to live your life, it can be all too easy to forget the element of struggle that life can bring with it. And the harsh reminders can be hard to take. But in the end, life lived thoroughly is often a tough, tough thing to handle, and not everyone is up to the job of urging us onto the high, perilous road that leads to True Success.

Whether they’re professionally trained or in our innermost intimate circles, the people who are trying to help us  might be doing us the biggest favor by not letting us fail gracefully, by not reminding us that we’re diminished, by not accepting our shortcomings as a matter of fact. It might be hard for them to be hard on us, and it might be hard for us to hear what they have to say, but sometimes you just have to bite down on that piece of rawhide, take a long slug of whiskey, and do your best to hold still while your buddy digs that piece of lead out of your arm, cleans it with that stinging sour mash, and ties it up so you can both ride on.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.