Sleep mask + earplugs = magic

I actually slept for seven hours last night.

Amazing.  I haven’t slept that long without being completely and totally exhausted/depleted/at the end of my rope in quite some time.

I’ve been sleeping in the guest bedroom for the past few nights, so I can sleep through the night without being woken by my partner sitting up late reading, snoring, coughing, or otherwise being human. The only problem is, the guest bedroom has a great view of the back yard, and the back yard is surrounded by trees, and those trees are filled with lively birds that love to awake and sing-sing-sing at 4 a.m. I typically wake up around 4:30, when I sleep back there. I may be able to sleep uninterrupted all night, but the morning is a problem.

So, sleeping in the guest room isn’t necessarily the most sleep-conducive thing to do, unless I go to bed at 8 the night before, which is out of the question. My body just won’t do it. Nor will my mind.

But last night, I had to do something to take the edge off my exhaustion. I haven’t been sleeping very well at all for weeks, now. I have been getting 5-6 hours a night, which is just murder on me, because it coincides with some intense deadlines at work. Not only does the exhaustion take a toll on my cognitive functioning, but it also erodes my mood. Whereas I’m usually pretty “up” and can-do, and my outlook on life is quite open and ready for just about anything (within reason), when I’m over-tired, my mood just spirals down, and I end up in very, very bad places, where no amount of reason or motivation will drag me out.

I noticed it especially last night

I was really feeling good all day, until late in the evening, when I was going to bed. All of a sudden, I was melancholy and blue, feeling sorry for myself and feeling lonely and afraid and overwhelmed. I just couldn’t handle much of anything, and I started to get mired in that sad-sack poor-me swamp from which no good things come. I was starting to get intensely depressed and feel like there was no hope for me at all.

I started to think about my family and how we just don’t connect. I started to think about my new therapist and get down about how the relationship I have with them is an artificial one and no matter how I may feel we’re connecting, they are essentially a professional consultant, and — for my own sake — I need to keep the relationship somewhat arms-length. I started to think about my old therapist, and wonder how they’re doing.

I was spiraling down into that place I’ve often “gone” in therapy… that place where my old therapist loved to “camp out” and plumb the depths of my past, to see what terrible hurt had been done to me. And just as it used to make me really uncomfortable to delve into all that — not because I’m afraid to explore the places where I’ve been hurt (I’m only too happy to do that at times), but because they were making flawed assumptions and reaching inaccurate conclusions about what caused that depression, what was pulling me down, what I needed to deal with.

I can think of many, many instances where I spent a whole hour hashing and rehashing crap that was dragging me down, only to get all turned around and more frustrated… then I had a good night’s sleep, and everything was miraculously all better.

Seriously. I’m not just making this up to make the psychotherapists of  the world feel inadequate. The main problem wasn’t that someone was mean to me when I was ten. It was that I hadn’t been sleeping.

Fortunately, I recognized that I was going there, last night, as all the thoughts and fears and regrets tumbled around in my head like puppies in a basket.

Thankfully I had the presence of mind to notice it AND do something about it

“This is ridiculous,” I said to myself, as I sat in the bed with my journal, ready to write some maudlin entry about the day. I had had such a great day — clipping along, getting things done, making good progress… only to crash at the end. I could tell very clearly that I needed to sleep, and I knew that I needed to do something about being woken at 4 a.m. by exuberant birds.

So, I pulled out a sleep mask and earplugs I picked up a couple of months ago. I had tried to use the earplugs before, but they felt strange in my ears, and I hadn’t tried again. Last night, I was beyond caring how they felt in my ears, and I fit them in as far as they could go. I also found an extra fan and turned it on low — to circulate the air in the room and to drown out background noise. Then I pulled on the sleep mask, laid back, and counted my breaths that were echoing loud in my ears.

One of the problems with wearing earplugs with me, is that it makes the tinnitus louder. I have constant ringing in my ears, which gets almost deafening when I stop up my ears. It’s the craziest thing, and it drives me nuts. But last night, I was in no mood to care. I just laid back, focused on my breath, and dropped off to sleep.

And wonder of wonders, I actually slept till nearly 6 a.m. A record for me lately.

And I’m feeling great. Really ready to take on the tasks ahead of me today and make some good progress. That’s a good thing. Because today is D-Day for this project. Deadline Day. And I have to be sharp. Dullness is not an option.

Tomorrow I’m going to try the sleep mask and earplugs again. Little by little, I’ll work my way back to being able to sleep. And take care of all these little niggling sleep-related problems as I go. It just amazes me, how much a good night’s sleep does for my mental health and overall performance. It’s like night and day.

Sleep matters

When I’m overtired, I become moody, can’t focus, have problems with thinking tasks, become over-reactive, and I have a tendency to melt down. It gets ugly pretty quickly, and then I have to work double-time to make up for what I’ve said and done and try to repair the havoc I’ve created around me.

But when I’m rested, I’m happy, hearty and whole, and no matter what life throws at me, I can handle it. I’m a productive, positive partner and team member, and people love to be around me. No obstacle is too much for me, when I’m rested. And no event I’ve experienced is too big to overcome.

Which makes me wonder how much unwarranted exploration I’ve indulged in, during past therapy sessions, when I was trying like crazy to understand why I was so depressed and down… why I was struggling so. I overturned all kinds of rocks and plumbed the depths of my aching soul… and was unable to come to terms with just about anything I found there.

But magically, when I slept and had enough rest, suddenly it all became clear. And I could not only deal with what I found, I was also able to use it and change it and shift it and have it be an asset, not a liability in my life.

And I wonder how many other folks have similar issues to mine — psychotherapy clients struggling with lots of stuff not just because of the nature of the events, but because they haven’t slept well in weeks, if not months and years… and psychotherapists themselves being thwarted in their work because the person across from them is physically incapable of a positive, healthy outlook on life.

If I were a psychotherapist…

One of the first things I’d do in dealing with my clients, is find out how they’re doing physically. I’d find out of they’ve been sleeping, how they’ve been eating, if they’ve had much exercise. I’d find out what their physical health is like, find out when they’re at their best and when they’re at their worst, and try to schedule time with them when they were at (or near) their cognitive peak — or at the very least, avoid seeing them when they were at a low point.

I wouldn’t waste anyone’s precious time, processing their “stuff” when they were over-tired or hadn’t been eating or exercising regularly. And I wouldn’t agree to see someone who wasn’t taking care of themself. I suppose I would start out with a new client who wasn’t in the best of condition, but if they persisted in neglecting their bodies and not getting enough sleep, I would drop them like a hot potato. Sure, they would be a natural source of unending revenue, but if I only took clients who were likely to need my help till the end of their born days, I’d be a pretty crappy therapist.

Most of all, I’d focus on the sleep thing. Especially if someone had sustained a TBI. Sleep deprivation makes you crazy, overly suggestible, unpredictable, and easily manipulated. Spy/intelligence agencies have known that for years, and they’ve used it to their advantage. But getting enough rest each night is one of the primarly building blocks of good health. If you don’t care about your health — mental or physical — then how much you sleep shouldn’t matter. But for me, it matters a whole lot.

And I look forward to getting more of it.


The beauty of structure

Today turned out to be a pretty good day… after spending all day Sunday doing things other than what I needed to be doing. I hadn’t checked my notes on Sunday a.m. about pending stuff that needs to get done, and Monday a.m. was the first I remembered a lot of it.


Oh well.

That’s what I get, when I don’t check my notes. The things I needed to do would have taken maybe an hour or two, but now I have to find time in my work week to do them, which will probably take substantially longer, since I get worn out pretty quickly by the 9-to-5.

Today, I had a pretty structured day, and I got a lot done. The beauty part was, I figured out how to cut some of my losses and rearrange my schedule so I could get the most out of it.

I got caught up in personal stuff this a.m., when I was supposed to be getting ready for work, and by the time I got on the road, I knew I was cutting it close to get to my 10:00 a.m. meeting. Traffic was flowing, though, so I figured it would work out.

Then I hit heavy traffic, and everything slowed to a crawl… so, I called my boss, told them I wasn’t going to make the meeting, and I gave them my status over the phone. I knew I had a lot to get done… and I had this other pressing errand I needed to do today — no exceptions! So, I took a little detour and ran the errand before I went into the office, so I would have the end of the day to get my work done.

I usually start to wake up around 3:30 in the afternoon, anyway, so it makes sense that I should be spending that time on the last-minute fixes for this deadline, instead of packing up and heading out to take care of that errand.

Long story short, I got my boring-but-essential chores and my important tasks done, all in good order. And I had a nice big block of time at the end of the day to really focus my full attention on the most important things on my list.

And I’m feeling really good tonight — like I’m in the flow… in a groove. Now, for a nice dinner and some reading, and getting to bed at a civilized hour.

Woo hoo.

It’s the little things, y’know?

Constructing a common-sense strategy for tbi recovery

I’ve spent much of the past year or so taking a long, hard look at the issues I face each day, thanks to my history of TBI. I’ve been hit in the head and knocked out, I’ve fallen a number of times, I’ve been in car accidents, and I’ve generally had a rough-and-tumble life that has left me woozy, out-of-it, forgetful, uncoordinated, temperamental, and terribly disorganized and unmotivated — in fits and starts — for most of my 40-some years. Over the course of my life, I’ve developed a number of coping mechanisms that have helpd me get by in life, cover my tracks, appear far more functional than I am, and generally keep up the appearance of being entirely functional and “with-it”… far in excess of where I’ve really been at.

But when I fell down the stairs in 2004, a lot of those coping mechanisms stopped functioning. And I came to realize, over the course of the past 4-1/2 years, that they may have seemed to work, but they really didn’t. Not for real. I was doing a darned good impression of getting along, but much of it was an act, designed to shield and shelter myself and others from the underlying issues that I’ve had for many a decade.

And I realized — for the first time, perhaps — that I am in no position to go running around doing an impression of myself. I want to BE myself, even if that self is broken in places. So, I commenced with my testing and my self-assessments and my introspection and a whole raft of activities that were designed to explore the dark underside of my experience.

I’ve cataloged my issues in a fair amount of detail. I’ve reoriented myself from avoiding looking at my troubles to looking them square-on and facing up to them for real. I’ve become much more self-questioning (in a positive sense), learning to question the stories that my brain is telling me about how it’s doing… and how I’m doing overall.

I feel as though I have a good amount of data collected. I’ve stored it in various places — in numerous notebooks, in spreadsheets, in databases. I’ve logged it on computers and on servers. I’ve written it down and collected it. And I’ve developed what I think is a pretty good practice for examining myself and seeking the objective truth about where I’m really at in my day – and my life.

Now it’s time to do something with it. Get past the simple observation and recording of information, and start to work with it. Work with my therapeutic neuropsych to craft some common-sense living solutions. Work with the various bunches of data I have about the problems I run into and the solutions I’ve found that help me overcome them. Take the data and turn it into information.

I am in the process of working with my diagnostic neuropsych on getting a summary report together about the findings from my testing. We’re going over not only my deficits and difficulties, but also my strengths and assets. It’s taking a while, because I keep having to stop them and ask for clarification. But I have enough information at this point to start logging the data into a database and then use it to map my strengths to my difficulties, and figure out ways I can creatively and intelligently address my impairments (be they great or small) by using my strengths.

And I’m doing this, using the new skillset(s) I’m acquiring at work — and which I will need to have in place, in order to be viably employable in the future. I’m using everything I have to address the things I don’t have… to understand my limitations, frame them in a way that makes sense to me, and lets me not only overcome them, but use them to my ultimate advantage in the world.

Information, after all, is only as useful as you make it. And now that I’m actually getting an official version of what the story is with me and my brain, and I have someone I can bounce ideas off — with both neuropsychs — I can design common-sense approaches to dealing with my difficulties that get me back on my feet — for real.

Shoring up my reserves

It’s been a really rough 24 hours. I finally got to a breaking point, and melted down in a huge screaming/crying jag last night. I just ended up pushed over the edge by my fatigue and exhaustion and being overloaded by a lot of extra issues, including homeowner concerns — maintenance, upkeep — and health problems.

My newest concern is not having adequate dental coverage. It’s a huge added stress in my family that I know I need to rectify. Dental bills can run into the many thousands, as Judge Sonia Sotomayor can attest (she’s got $15,000 in back dental bills according to her personal financial records), and it doesn’t feel good, even in terms of hundreds of dollars. I’m not over my head in hock over dental bills, at this time, but I could get there quickly, and I need to arrange for coverage, so I don’t get to that place.

But the prospect of doing that drives me nuts. I get so turned around and confused by all the information, and then I never know if I’ve made the right decision, and I’m afraid I’ll end up paying all this money and making decisions that can’t be reversed very easily. I know I need to keep my head on straight about this and not panic. I just need to figure out how to do it, map out my plan, and do it. But I haven’t been able to manage that. I’ve just been kind of marginal, lately, and I haven’t been able to get a lot of the things done that I need to.

So much of this TBI business really is about having adequate resources to deal with what life throws my way. Whether it’s learning new things at work, handling odd jobs around the house (which I’ve been lagging at, too),  or arranging for medical/dental coveratge, how rested I am, how involved I am, how strong I’m feeling all have a huge role to play. And my resources have been slowly but surely eroding away, over the past while. I haven’t been sleeping well for months, now, and that makes it difficult to handle much of anything. My temper’s short, I don’t get the things done that I need to, I tend to push off all but the most exciting and interesting activities (which means I push off about 85% of what I’m supposed to be doing), and I have trouble learning and processing information.

For a while, there, I was pretty intent on keeping my sleep deficit to a minimum. But then I got sick of having to live such a limited life, always going to bed at a responsible hour, sleeping a full 8 hours (or at least 7), and being very deliberate about everything I did.

How boring!!! I didn’t want to have to tip-toe through life, always anticipating everything I did and said and thought, and adusting my behavior to be nice and acceptable. Plenty of other people wing it, and they’re fine. And I’m sure a lot of people out there have sustained TBIs and don’t even know it. Does that stop them? Not always. Sometimes… maybe lots of times… But it seemed to me — and it still does — that life is a messy prospect, at best, and in the end I’ve always been more of a creative bohemian type, even if I am a software engineer, so I’d much rather enjoy my life and be flexible and keep up my activity level and have a good time and do things that interest and uplift me, instead of playing it safe all the time and being so careful about every danged thing.

It was such a relief, to just stay up past my 10:00 bed time and watch a good movie till the end, without needing to watch the clock. It felt so good to just get up first thing in the morning – around 5:00 or so – and futz around with this personal resources management program I’ve been designing. It felt so great to not be tied to a schedule, to not force myself to be on some hour-by-hour time-clock, day in and day out. Maybe that works for some people, but it doesn’t work for me. It works for maybe a few days, but then it starts to break down, and my self-management techniques turn out to be more of a burden than a help.

Of course, I’ve found out the hard way (again…) that I can’t keep driving and driving and driving myself. Even if it’s all fun(!) I need to pace myself and give myself time to recharge. Last night, I headed off to bed at 10:30, and I got to sleep around 11:00. And I slept till about 6:00 this morning. Seven hours is the longest I’ve been able to sleep in weeks — I usually clock in around 5 or 6. I don’t know if it’s that pineal cyst that’s throwing me off, or it’s my stress level, or it’s my pacing during the day.

I know I’ve been spending too much time, late in the evening, on the computer. My diagnostic neuropsych tells me that computer screens emit light that is very similar to daylight, so our bodies think it’s day, and they need to wake up. That could explain why sitting down to my laptop in the evening always makes me feel better. And it could explain why I have a hard time winding down later in the evening when I log off. I know I need to change that. It’s not like I don’t have anything else I could be doing. Relaxing is a lost cause with me — I’m also in a lot of pain, these days, so unless I keep my mind busy, I am in a lot of discomfort. But I can find other things to do that relax me, don’t get me all charged up. Things like washing dishes or folding clothes from the dryer. Things that need to get done, boring or not.

It could also be that I’m so tired, I can’t rest — which is what happens with me. I have to do something extra-ordinary to drag myself (kicking and screaming) into slumber. Left to my own devices, I’ll just keep going…

I think this weekend is going to be a Benadryl weekend. I don’t have any outside commitments that are overly demanding on my cognitive abilities, so I’m going to just take the drugs and sleep as long as humanly possible.

With any luck, by Monday, I’ll have gotten at least a little bit back on track.

Using my head – for real

A while back, I was wracked with a sort of remorse. It was really sinking in that the way I worked before is not the way I worked now. I saw it more each day, on the job again with people whom I had worked with, 10 years ago. I am not the same person I was back then. That’ s for certain. My temperament tends to be more snarky and snappish, my attention span is shorter, and my ability to grasp and hang onto information over extended periods of time is very different than it used to be.

It’s a problem. ‘Cause this job and my ability to perform it is my bread and butter. And I don’t want to let the people on my team down. But I was having a hell of a time remembering the things I learned only a few weeks ago, especially when I hadn’t used them on a daily basis since I learned them. I was getting pulled off my past projects by new priorities, and I was spending more time testing and tracking and planning my work, than actually doing it. So the stuff I thought I had “down” about a month before, seemed like it had mysteriously evaporated.

It was a problem. It felt like a huge one. And I felt like I was spending all my time playing catch-up.

So that’s what I’ve been doing, lately. Catching up. It often happens that I  need to retrace my steps and redo my work, so I’m doing it once more. This time, though, I’m employing a different learning strategy than I used before. This time, I’m actually putting the learning into action by applying it to my workaday tasks — and working on a private project I’ve been designing for the past several months. This private project actually relates to my workaday world — it’s a special productivity tool I use to manage my strengths and limitations and constructively overcome the hurdles that get in my way, based on what I know about my own tendencies, and my inventory of strengths and weaknesses and coping skills that have worked for me in the past.

This is good. Not only am I integrating my whole life — personal and professional — in complementary ways, but I’m also creating new ways to master the new skills I need to acquire. Instead of just reading and making notes, like I did six weeks ago, I’m now using the new skillset I need to master.

It’s gotta be hands-on. Or I’ll never retain the new information.

It’s so wild, how I forget that. I’ve written before about how I learn best — by doing — and there’s a part of my brain that knows all about it. But putting it into action is the challenge. A big one. And I forget that I have to take a break, let the information sink in, and actually use it before moving on to “learn” something else. Instead, I keep reading. It’s not enough that I learn — and master — one single skill at a sitting. Oh, no — I must read and conceptualize more… and more… and more…

I’m not sure what it is — I think my hungry brain wants to race ahead and learn-learn-learn. It gets into this groove and instead of stopping to implement what it’s just read, it gets lazy or acclimated or lulled into a false sense of security, and when I’ve gotten to the end of one section or one chapter, it wants to jump ahead and read more stuff that’s new, different, interesting. It gets into this habituated flow and gets stuck in a loop. Especially when it comes to reading, studying, taking in new information.

That’s very unproductive, and it has a tendency to overwhelm me, before too terribly long.

But I can’t be too hard on myself over this. The fact of the matter is, I’ve had six weeks for the initial flood of information to sink in. It may feel like I’ve forgotten it, but when I get back into using the information I read about a while back, a little bit at a time, I can actually sense some familiarity with it. So, it’s not gone. It’s just tucked away in the back of my head, and I need to find a way to coax it out again into plain view, where I can put it to good use.

Here, again, is a great example of where my brain is leading my mind astray. It’s convinced that I’ve lost what I gained, some time back, and it’s ready to panic, run for the door, relegate me to second-class status. The mis-firing processes in my brain are interpreting this extended learning process as a sort of failure. Its artificially elevated standards say, “If you could really do a good job with this, you’d be proficient, by now,” totally underestimating the complexity and level of involvement required to do this new work I’m taking on. My brain gets turned around and confused and disoriented, so it thinks it’s lost in the wilderness for all time and is going to wither and die there like that kid from New Jersey who starved to death in Alaska, instead of it just being momentarily disoriented on a street corner in New York and needing to ask for directions from a passerby. It can’t immediately see a way through my passing frustration, so it thinks there is no way through. It can’t immediately access the information I stashed some weeks back, so it thinks it’s gone for good.

But here’s the thing — it’s not that I’ve lost what I’ve learned before. It’s that it’s filed in a virtual drawer in my head that I just need to find and open up again. I have learned, actually. It might not feel that way, but I have. And now I’m shifting into a different stage of my total learning process. All that reading and reading and reading without associated mastery isn’t a terrible thing. It’s not — I just have to realize that the reason I was reading and reading and reading before was different that what I thought it was — and it’s actually a lot more pragmatic and clever than I realized up till this point.

The real reason I was reading and studying like crazy before was for preparation, not execution. I was reading compulsively, not to master the material, but rather to familiarize myself with it, to get the feel of it, and to get myself to a point where I could listen to someone talk about all the topics and subjects and issues and aspects without being flooded with an overwhelming tidal wave of information overload… and eventual panic. Thinking back, I can remember many instances where conversations with my team members landed me in the middle of an emotional avalanche that totally shut down my brain. I just blanked. They were talking and talking about all this stuff, and I wasn’t able to keep up. So, I spent a lot of time reading about the things they were talking about. It was for the sake of putting my anxieties about verbal communication at rest, rather than implementing anything.

That first piece — the panic switch shut-off — was the first thing I had to do before I could move forward. I realize that now. And in its hidden wisdom, my mind devised this way for me to do just that — through reading and studying and familiarizing myself with the material before I started into all the doing.

So, actually, it wasn’t bad for me to spend all that time just reading and not doing. In fact, it wasn’t spending time, it was investing it. And now it’s paying off. Because I can sit through a conversation with people who are talking about stuff that used to be brand-spankin’ new and totally intimidating… and I don’t freak out.

That’s a good thing.

Getting it right… most of the time

Had a mixed weekend… My parents came to visit for their annual catching-up time. We’ve been getting together in a spirit of peaceful co-existence for a little over 10 years, now. It’s a way to make up for the years lost to our mutual inability to agree on many things in life — an inability that bordered on overt hostility for many years. My parents aren’t bad people. They just have their own point of view that isn’t always tolerant of me and my opinions, or inclusive of my limitations, and they frequently refuse to budge. And since I’ll admit I have the same tendencies. This apple didn’t fall that far from the tree.

Over the last 20 years or so, their hardline stances have gradually eased (helped a great deal by my vacating their house, 25 years back), and the range of what they consider acceptable has widened considerably. I’ve also learned to accept them for what they are, appreciate their strengths, and cut them some slack for their limitations. But it’s taken a long time to get to this place.

They used to give me so much crap about how I lived my life, how I conducted my affairs, and how I behaved. They didn’t much care for the jobs I held, the clothes I wore, the way I cut my hair, the schedule I kept. I was doing the best I could, but they didn’t always see it that way. And my standard response was to either go on the attack, or withdraw from any contact with them at all.

In retrospect, I can see that I’ve often misjudged their reactions to me. I was a very intense kid, and I took everything hard – including their judgment. My other siblings somehow manage to let their criticisms roll off their backs, or at most treat them as an inconvenient distraction. I, on the other hand, have always taken my parents’ criticisms to heart — I’ve taken things they’ve said and done far more personally than they probably ever intended it.

But truth be told, my parents were often overtly hostile and antagonistic towards me, when I was growing up. Even though I was very intense, they were pretty hard on me. They seemed to think that I intended to screw up, or I just wasn’t trying hard enough. They rarely seemed to grasp the fact that I needed help sorting things out — and when they did, it was cause for embarrassment. Teasing. Angatonism. Name-calling. Shame. Etc.

In retrospect, I think that of their rough way of relating to me possibly had to do with their concern about me not being okay in life. They worked overtime trying to steer me back on the right path, after I’d fallen off… never really understanding why I’d fallen off or gotten turned around. They were big into correcting me after I’d screwed up, which — with head-injured kids — is not the most effective thing to do. You’ve got to be pre-emptive with head-injured kids. Steer them in the right direction before they have the chance to get turned around. My parents, for some reason, never seemed to be paying enough attention ahead of time, to steer me right. So, I was constantly being corrected for things I didn’t realize I was doing wrong — till it was too late.

But despite all my screw-ups, my false starts, my blunders… after all this time, my folks have seen that despite the “worst” of my work and life decisions, I’m still here, and I’m happier than ever. I think their onetime hardness towards me had to do with worry about/for me. And I think a lot of their softening has to do with them seeing me actually grow up to become a productive member of society, holding down steady work and buying a house and keeping a very involved marriage going for 18 years, now. Even though I’ve done most things “wrong”, according to their standards, on the whole, things have worked out very well for me.

My spouse has also helped immensely, as they flatly refuse to put up with my parents’ most intrusive and verbally abusive crap, and they challenge them on their fondly held assumptions, to make them think about what they say and do. My spouse has been able to stand up to them far more than I ever could — or probably ever will. They don’t have the history with them, and they also don’t get the brunt of my parents’ aggressive judgmentality. For some reason, my parents don’t try to corner my partner the way they come after me.

But then, my partner didn’t grow up with head injuries, and my parents never acclimated to treating them with the proverbial iron fists in velvet (when I was lucky) gloves they used on me. In their eyes, I suppose I am still the “damaged goods” kid that used to worry them sick and bug the crap out of them with my poor choices, my bad behavior, my inability to get all the facts straight about much of anything, and just give up doing whatever I was doing whenever I was under pressure. To them, I’m still the sibling who beat up on the others, the one who wasn’t safe to leave alone for long, the one who would just do things that would get me in trouble — like run out in traffic, or wander off in the woods, or drop/lose/run into various objects, or say the wrong thing to the wrong person at the wrong time — without apparently having a clue what I’d just said or done.

I’m still the “special” one in the family. Not the bold adventurer who’s overcome tremendous obstacles and difficulty to achieve some measure of success in my life — success far beyond anyone’s expectation (except mine), which is notable on any level — and even more remarkable, given my history and my neurological profile. My parents haven’t seen me go through all my cycles and changes, they haven’t seen me in action, day in and day out, so they can’t appreciate everything I’ve accomplished or the sacrifices I’ve made to accomplish it. And frankly, they are so different from me, with such different social and cultural priorities (they were raised in a completely different place and time than me), even if they had been privy to all my adventures over the years, they probably wouldn’t have been able to fully appreciate what I’ve accomplished.

The things I’ve achieved — the good-paying job, the beautiful home in the well-to-do community, the mainstream social status, the public service position, the attainment of material success… those aren’t things that my parents particularly value. They’re much more interested in church and raising kids and alternative local community — none of which are regular parts of my life. So, the accomplishments I’ve achieved are all but invisible to them.

Likewise, the things that they value most are just not on my radar. I think I’ve just had so many problems with communication and interactions and behavioral issues, from an early age, that I never fully acquired the skills necessary to have the kind of life my parents have — lots of social interaction, lots of friends, lots of activities and travels and explorations. I have also had problems with fatigue for as long as I can remember, so I’ve never had adequate energy to match their pace. And when they pushed me to keep up with them, as they so often did when I was a kid, it just led to meltdowns, behavior problems, processing problems, judgment problems… Problems.

So, the enjoyment they feel with activities like getting together with large groups of people for fellowship and fun, and constantly going-going-going, working-working-working are not on my radar, either. Which leaves us with precious little to share, at times. Much as we would all like to find common ground, I’m just not there… and neither are they. And when they try to reach out to me, I’m often so overwhelmed and overwrought with their energy, their intensity, their sensory bombardment — they love to talk-talk-talk at the tops of their lungs and make contact a lot with hugs and reaching out to touch my arm or my shoulder as they’re talking — I end up experiencing a lot of auditory/sensory distress and sometimes pain. I don’t much care for it, and I don’t know how to articulate what I need them to do. And they still don’t know how to interpret it when I withdraw and start to get snappish with them.

So, we all end up on pins and needles, unsure how to interact. I try… I really, really do. But frankly, they’re too much for me to handle. And to this day, they cannot seem to temper their expression and tone down their level of excitement and activity to a tolerable level for me. They don’t seem to realize that they need to. And I can’t figure out how to get them to back off of me. When I do ask them to chill, they get upset and seem to feel rejected or pushed away. They just don’t understand the issues I have, and I’m not sure how to explain it to them without them taking it as though I’ve hurt them, or them sliding into some abyss of guilt and shame over not taking better care of me when I was little.

Well, it probably sounds pretty bleak — and in some ways, it is. On the whole, though, my parents’ visit this past weekend was pretty good. We didn’t have any of the blow-ups that sometimes happen with me, when I’m alone with them. My spouse had to work, one of the days, so I was all by my lonesome with Mom and Dad for most of  Sunday, which made us all a bit nervous. But I got through it without losing my temper or freaking out or inadvertently saying things that they found hurtful.

I also managed to get through without getting “pinned down” by my mother over my financial situation (no, I did not divulge details, as there’s nothing they can do — they have no money to lend me and they don’t know anyone who does). And I managed to avoid breaking down in tears as I sometimes do, when she “locks” onto me and starts grilling me for information. I came close to losing my cool — my mother, for some reason, loves to poke and pry and pick at emotional “scabs” until you break down in tears.

She’s always had a somewhat sadistic streak, and she loves to push people till they break. She did it to her older sibling (who is “special”) when they were growing up, I’ve seen her do it to many of her friends and relatives, and she did it to me a lot, too, when I was little. She used to just hound me, when I was a kid, pushing and pushing and pushing me to talk about sensitive subjects, talking and talking and talking, and never letting up until I was beside myself with confusion and frustration… and snapped. I’m not sure what makes a grown woman do that to a child, but she always seemed to really enjoy it when I was growing up, and she still gets into that “mode” at times.  She almost got to me on Sunday,when I was alone with her and my dad, pushing and pushing and pushing me over not having any retirement savings (I didn’t get into the details about why with her). But I managed to avoid a total freak-out and redirected the conversation — with the help of my Dad, who is none too keen on my mother’s mean streak.

Thinking back on the weekend, it’s kind of sad that the best measure of how well it went, was how well I managed to avoid something bad happening. I’ve never had an easy relationship with my parents. It’s nothing like what I see my other siblings having, and when they took turns calling my dad on Sunday to wish him happy Father’s Day, it was tough to hear the relief in his voice that he had someone else to talk to, besides me. It’s always been that way — he tries and I try, but he’s always happy to have a chance to talk to someone else when I’m around. I know I can be difficult at times, and it’s not easy to for me to interact and talk about things, but it would be nice if he could at least pretend to be interested in spending some uninterrupted time with me

It would be nice if I could just hang out with my parents without needing to do anything. But that’s just not how they are.

At least I did try to meet them on their terms. They tried to meet me half-way, too. And I managed to not lose my cool and cause any more damage that I already have with my hot, hair-trigger temper and my poor choices of words, so that’s progress.

We ended the weekend with me running out the door on Monday morning to catch the train to work, leaving them to finish their breakfast in the spacious family room of my beautiful house. I wasn’t around to make them nervous, and they got to enjoy the domestic evidence of how well I’m doing. It was probably the best way we could part ways after those 2-1/2 interpersonally challenging days. I wish I could say they left too soon, and that I wish we had more time together. But right here, right now, at least my parents and I are on amicable terms, we do care about each other, and we do all make an effort to peacefully co-exist when we’re in the same room.

That’s more than I can say for our relationship 15 years ago. And it’s more than a lot of other people can say.

I didn’t get everything right over the weekend, but I managed to get enough.

Confessions of a compulsive list-maker

I admit it – I’ve grown somewhat compulsive about my list-making.

I created a “master list” that I use to track my daily productivity — and to make sure I’m doing all the things I’m supposed to be doing. I also have separate lists for work things and home things.

I have lists that track the longer-term and more complex items that are on my to-do agenda: clean my study, file my taxes, fix the broken faucet in the kitchen, sell extra items I have lying around the house online.

I also have lists that detail “big picture” things I need to do — like clarify my Life’s Work, strengthen skills I need for long-term employment, and distant goals in the future.

Now, it may seem like a lot — and on some days, it is. But frankly, if I didn’t keep these lists, things would fall off my plate and not get done. Things that need to be done — like fixing the faucet in the kitchen and filing my taxes and taking the trash to the dump. These are just things that regular people do, they’re just a part of life — and if I don’t write them down, they won’t get done. I’ll forget all about them, while I’m off doing something else that did get written down on one of my lists. Or something that looked like fun that popped up out of nowhere and pulled me off in a different direction… only to eventually dissipate and disappear into the aethers.

These lists are not only helpful in keeping me on track — they also help me monitor my fatigue level. And my overwhelm. When my lists start getting longer and longer and increasingly involved, I can tell that I’ve got too much on my plate and/or I need to spend some time catching up with myself. Having a lot of things on my list overtaxes my system, yes — but it’s not only a cause of fatigue and overwhelm. It’s also a symptom.

I can tell I’m getting over-tired and not taking quite as good care of myself as I should, if I start listing an increasing number of small steps in between big ones… or I list things that really don’t need to get done. When I start micro-managing myself and adding things to my plate “for the fun of it,” I can tell I’m getting off track, and I need to step back and reassess where I’m at — not just in relation to my tasks, but in relation to my life.

Here’s a healthy list:

  • Clean my study
  • Work on taxes
  • Fix faucet in the kitchen
  • List items for sale online

Here’s an un-healthy list:

  • Clean my study
    • Find bank statement folders for 2005
    • Organize letters from family
    • Collect all journals since 1994 and organize
    • Vacuum and dust
  • Work on taxes
    • Clear workspace on dining room table
    • Gather calculator, scrap paper, pencils with erasers
    • Defrag computer
  • Fix faucet in the kitchen
    • Locate wrenches
    • Buy parts at hardware store
    • Clear out sink to make space
  • List items for sale online
    • Take pictures of items
    • Download to computer
    • Crop and edit photos
    • Write up text for ad
    • Research comparable prices
    • Check email regularly after listing to see if there are any takers

It’s not that these steps aren’t all appropriate. Some of them are, and some of them aren’t. The point is, when I get to the point where I’m writing down every last little thing I need to do (sometimes I go so far as to specify which jeans and boots I’ll be wearing when I mow the lawn), it’s an indicator that my brain is not trusting itself with relatively basic details and it is compensating in advance for problems it’s anticipating. That means it has an inkling that it’s having problems, and I need to listen to that – pay attention to the signals and signs, and adjust accordingly.

The way I adjust is by taking time off. Stepping back and pacing myself. Not getting so wound up and frantic over every little thing that I can’t function unless I’m giving myself explicit instructions down to the most minute detail, but breathing deeply and relaxing and just thinking things through, before I get started with them. When my brain is in decent working order, I don’t need to have every little action item outlined for me. I can identify the big things, the main activities, and then work from there, stopping frequently to check in with myself about how I’m doing… and not being afraid to step away for a break, because I know I’ll come back to finish the job.

I suppose it’s about trusting myself… knowing my limits… and recognizing the signs of overwhelm — while it’s happening, while it’s building, and before it snowballs into a massive Sisyphusean boulder of hurt-in-the-making.

Yes, those lists do come in handy… so long as I don’t  become too dependent on them and let them take over my life.

‘Cause when the lists do take over my life, I end up being so busy keeping them updated, that I actually get less done. And then I’m upset with myself at the end of the day. And that’s not good. The point of the lists is to get things done, not keep more lists. The point is to live life, not just observe it. The point is to establish a real connection with what I do, how I do it, and why I do it, and inject some consciousness, already, into the whole act of living. It’s about turning work into art, life into art, and using extra tools — in this case, lists — to deepen my involvement in my daily life, which can (when I ignore it or gloss over it) can rapidly get away from me.

Anyway, last night — after not getting much of anything done and realizing I’d spent a whole day tracking my progress, instead of making progress — the following occurred to me about my lists. And I quote from my journal:

It’s quite simple, really.

It’s (list-making) not just about keeping lists and checking off items and critiquing myself at every turn.

It’s much more about paying attention to your life. Not taking things for granted. It’s about participating in your own daily activities with full consciousness and mindfulness.

And learning along the way.

It’s about having a fully involved life that you live by choice, not by default. About being open to experience and not falling back on rote repetition of someone else’s ideas about what your life should be like and what should matter to you.

Indeed, tracking what I’m doing, how well I’m doing it, and understanding why I’m doing it in the first place gives me a safe and convenient and tangible connection to my life. It relieves me of the pressure of keeping everything up in my head, and it helps me see — right there in front of me in living color (green for success, orange for still-in-progress, and neon pink for rats-didn’t-work-out-I’ll-try-again-tomorrow) — how my life is shaping up, where I’m doing well, where I’m falling down, and how I can do better next time.

Ultimately, this record-keeping compulsion serves a very useful purpose, in showing me where I’m at… Where I’ve been… How I got here… And where I think I should go next.


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

Part 2

Part 3

Part 4

Woo hoo! I’m on Wellsphere

A few days ago, I got an invitation from Wellsphere to contribute my blog posts to their health and wellness site — it’s a community/info sharing place where people with all sorts of health and wellness ideas and concerns can connect and share information, experience, and (hopefully) hope. There are communities for healthy living and health, as well as resources and Wellpages – comprehensive, personalized web pages with “health knowledge from carefully selected medical experts, doctors, patients and other leading health writers.”

I’m pretty excited to be included in their site. It’s a great opportunity to spread the word not only about MTBI, but also how it doesn’t have to be the end of the story for folks when they have one.

I’m in the process of going in and cleaning up the posts that got brought in. There are some double-postings happening, which need to be edited. It’s to be expected, when things are done programmatically. And going through the site will give me the chance to get to know my way around better.

It’s all good.

But today was a really, really good day

See? Active management of my “new brain” works… I can hardly believe the difference between yesterday and today. Like day and night – or night and day, respectively speaking.

Yesterday, I was all over the place, wafting about on every wind that came along, getting “blown off course” by the little molehills that turned into mountains, losing track of my work and my progress, and ending up the day just exhausted, with precious little to show for my efforts, other than aggravation and rabid self-criticism.

Today I did things completely differently.

I set my intention to take the train into the city today, so I could have some time to plan and get clear on what I needed to do. I was running a little late, though, and since I wasn’t sure if I was going to be able to make the train on time, I made a Plan B for how I would drive in, if I just missed it or didn’t get to the station in time. There are three different ways I can drive to the city to work, and one of those routes is not far from the turn-off for the commuter rail stop. I’m lucky, that way — even if I miss the train, I can turn around and get back on one of the main routes.

I wasn’t sure I’d make the train, but I decided a few miles down the road that I was not going to stress over it. If I made it, I made it, and I would be glad. But I was not going to get worked up over it — especially since it was raining and traffic was very heavy. I kept a level head and took my time. And wonder of wonders, I actually made it to the train with three minutes to spare.

On the train, I took time to read the Give Back Orlando material and get my head on about tracking my progress. I also took time to plan my day. I had some things I wanted to read for work, but I didn’t get to them. But again, I didn’t stress over it.  I just rolled with the changes. It felt so good, to not have to drive the 90 minutes into town… I was just glad to be able to sit and read and relax.

So, my pacing was pretty good today. Relaxed and deliberate and measured. Well-managed, if I say so myself. I also took care of my physical health. I made sure that I had plenty for breakfast. I only had a small cup of coffee and a bowl of cereal before I left the house (my cat had a better breakfast than me), but when I got to the office, I ran out to a breakfast place and got myself a little mini-quiche — eggs and pastry and vegetables. I don’t care if quiche is “girly” fare. I was hungry, and I needed something more than cereal to tide me over. And I had some orange juice, too. Not the bottled stuff — the real fresh-squeezed stuff. Tasty.

When I got to my desk, I took my time setting up, and I did not start in on any of my tasks, until I understood exactly what needed to be done, and by when, why, and how I was going to do each one. Where there were gaps, I figured out how I would fill in those blanks — whom I would talk to, what info I needed to ask about. I looked at my notes from yesterday, organized my notes for today, and I prioritized all of my tasks. I have a lot of tasks each day – I have a busy job and a full schedule. And I’m on deadline on a really critical job. So, I can’t afford to monkey around.

Keeping a level head, I took my uncooperative little brain in hand, today, and I followed its shenanigans very closely. I wrote down everything I was responsible for, ahead of time, and when my brain started to balk at how much I had to get done, I kept an even keel and broke down the larger tasks into smaller ones and checked them off as I went. I didn’t move on to the next step, until I checked the results of the step I had just completed. It was painstaking and slow going, but it was very efficient.

I also tracked when I was having a “head-injured moment” and I put a big “HiM” in the margin of my personal notebook beside my notes about it —  and I circled it, so I can look back on it later. And I marked the incidents with a highlighter that’s in a color that I really dislike, so I’m sure to notice those moments, when I look back on them

There were some times when I got turned around and snappy with folks I work with. I felt bad about it afterwards, but fortunately, I work with good people who are also under pressure and have been known to snap, themselves, so they cut me some slack. I wrote down each time I started to get overwhelmed and I highlighted it in that nasty color, and I made mental notes about what to do better next time.

Just writing it down made me feel better. And seeing that I had a plan for how to handle things next time also really helped. It’s funny – I used to be so opposed to writing things down and keeping notes. I knew in the back of my mind that it was a good thing to do, and I wanted to, but I could never get my act together. Impulse control and initiation issues. Seriously. But today, I was so upset with myself about how yesterday went, I had no other choice. I had to actively manage myself, and so I did.

I also took some time for myself to unwind and just decompress. I knew that I was supposed to meet with someone at 1:00, but I walked out of the building at 12:30, and I took my time going back. The person I was meeting with has a very fluid schedule, and they’d brushed me off from the 11:00 meeting we’d had scheduled, so I just decided to take time for myself. I went for a long walk on this beautiful sunny day, not worrying about the timing, but doing the long walk around a bunch of blocks, and making my way eventually to a deli to get a sandwich. I didn’t have the leafy green salad I was thinking of getting — the lettuce was just about gone. I had a roast beef sandwich with some lettuce in it, and some chips. Just enough to tide me over for the rest of the afternoon.

I really felt better, too, not having a huge lunch. Some days, I get Chinese food, and they give you so much food, it sits like a big lump in my stomach all afternoon. I know I don’t have to eat it all, but perhaps it’s a perseverative quality of mine, that I compulsively finish my food. Today, I ate relatively light, but I did eat enough to not be hungry anymore. Somehow, I think the protein at breakfast and lunch was a help to me. Some days, I just can’t stop feeling hungry. Could be a protein thing.

Another thing I did right was, I drank plenty of water. I have a pitcher I keep at my desk, and today I actually used it. And I didn’t drink three big cups of coffee. I had a small cup with breakfast, and then another medium-sized cup around 2-3 p.m. I had been getting in the habit of having 3-4 mugs a day, which is not good. I have been meaning to cut down – especially since I’ve been having so much trouble sleeping. Today, I was able to make progress. I will probably never completely get rid of coffee, but I can at least cut down. And not drink any after 4 p.m., at the latest.

Towards the end of my workday, I took a look at my list, and I realized I had actually made progress. I’d accomplished a lot almost all — of the things I have to get done. When my boss stopped by to chat and I told them about another item I have on my to-do list to finish out one of my jobs, they were so happy. They told me they are really glad I’m working with the group. I said, “So am I,” as I was running for the train. All in all, a good way to end a good day.

So there it is. The difference for me between a good day and a not-so-good day can be something as simple as taking notes and paying attention to what I’m doing, from moment to moment. Mindfulness and attention and taking my time. Just being with the things I’m working on — focusing on them, giving them their due. Miraculously — and I never expect this — the more slowly and carefully I go, the quicker things get done.

I’m a happy camper, tonight. And I hope to repeat the performance tomorrow.