Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Oldie but goodie – Brain Injury Rehab Ideas from Harriet Katz Zeiner

I came across this several years ago, when I was traveling and needed to fill my mind with things other than overseas business. I enjoyed it (still do) and hope you do, too.

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

How to find a neuropsychologist – a step-by-step plan

question-brain
What’s going on in there? And how can I help it all work better?

This is the start of a step-by-step description of how I am finding a new neuropsychologist. My current one is retiring and moving away, so I need to find someone new who can help me – preferably in ways that my current neuropsych (who I have been working with since 2008-2009) has not been able to.

We all have our strengths and our weaknesses, and The Good Doctor is the same as anyone else. In the ways they have helped me, they’ve done a stellar job. In other ways, they have not helped me at all, and in fact, I feel as though I’ve lost ground, in part due to their influence and unwillingness to address issues I’ve raised.

When I first came to them, I was very unclear about many, many things. I was also struggling terribly with communication and being able to hold a two-way conversation. I had a lot of old ideas that I’d picked up from others, which were really holding me back. Heaven knows, I had plenty of chances to be on the business end of society’s proverbial cattle prod, and it didn’t help my self-esteem. I also was burdened by a tremendous overload of stress hormones and bad habits I’d picked up from years of using stress to keep my brain feeling awake.

There have been specific physiological/logistical reasons for my “behavior choices” which I never fully realized till I started working with The Good Doctor. And in many ways, my progress has really been fueled by my own willingness to question their judgment (later, after I left, as my brain doesn’t seem to work fast enough to piece arguments together while I’m in their office). It sometimes takes me days  to realize that I think they’re really full of crap, but then I figure out why I think that, and a real & valid solution comes to mind, to replace their cockamamie suggestions.

I won’t get into all my gripes here – suffice it to say, I now know a heckuvalot more about how to choose a neuropsych, than I did back in 2008, when I was searching high and low for help.

And I’m in a much better frame of mind — and I have the proper skills — to go looking for someone who can help me “hack” my brain, understand the places where it comes up short, figure out strategies for addressing those issues — and also figure out where I’m strongest, and how I can really pump up the goodness that comes out of that.

Here are the steps I’m following, to find myself a new neuropsych:

  1. Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help. (Click to read more)
  2. Be clear about what I want to achieve from working with someone. Make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.
  3. Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.
  4. Put together a list of questions I have for potential candidates, finding out about their background, their successes (and failures), and their philosophy on recovery.
  5. Figure out what kind of schedule will work for me, based on my commitments and energy level.
  6. Set up appointments to talk to my short-list of candidates, and see who I like. Find out the answers to the questions from Step #4 above. Make notes on my impressions — before, during, and after.
  7. Discuss my notes with my spouse (or someone else whose judgment I trust), to see what they think.
  8. Sleep on it. Pick one. Go see them.
  9. Be clear about what my expectations are, what kind of timeframe I’m looking at to work with them (will it be related to a length of time, or a specific issue I’m having issues with?), and what their expectations are, as well.
  10. Commence the continuation of my rehab.

This seems like a decent list.

And with this in mind, I need to get out my TBI symptoms tracking worksheet (Download the Daily Experiences Journal (Wide) – Word Document here), and start using it again, so I can have a better idea of where I am, relative to where I’d like to be, both now and in the future. I may even modify the sheet that I have to focus on the issues that are most pressing for me (rather than being a laundry list of all 84 ways TBI makes my life miserable.

Back in 2008, I was tracking my symptoms on a daily basis — and I collected a lot of data. But it was too much. Now I know that I need to stick with the main things and identify actual patterns in my symptoms, so I don’t overwhelm my docs with all that information. They’re on information overload, as it is.

I don’t want to be cruel😉 To them, or to myself.

So, off I go to print my daily tracker — and update it to have only the issues that are bothering me right now, in ways that I’d like to fix.

After that, I’ll take my long walk down the road, to see what I can see, get the blood pumping, and then for my nap.

Onward!

Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

The downward spiral of fatigue

It’s wild – it starts with the best of intentions. It’s exciting… very exciting to life my life, to go-go-go, to do lots of things and get tons of stuff done.

But if I don’t watch myself, I can get into trouble pretty quickly. If/when I get over-tired (and at the rate I tend to to, it’s usually a question of when I’ll get over-tired, versus if that will happen), a downward spiral starts in, that just won’t quit, till I start to rattle and shake like the USS Enterprise being pushed through an asteroid field at full speed. (And I hear Scotty yelling, “Cap’n, she’s breakin’ up! I can’t give ‘er anymore!“) I question my sanity, my ability to cope, my ability to live, and I’m exhibiting symptoms that someone who doesn’t know better would interpret as mental illness.

It’s not mental illness, per se. It’s my brain acting strangely under abnormally taxing conditions.

Here’s how things steadily go downhill…

The Downward Spiral of Agitation and Fatigue

And before I know it, I’m in trouble. I’m angry, I’m emotionally volatile, I’m raging, I’m blowing up at people, I’m melting down into a pile of quivering agitation, I’m irrational, I’m over-reactive, I’m hyper-active, I’m everything I know I should not be, but I am powerless to prevent it.

Also, I am in pain. Not just the muscular/skeletal pain that comes from over-exertion, but the surface pain that comes from fatigue, that makes everything hurt, from my clothing to human touch. It’s awful, and there’s nothing to do to stop it, when it’s full-on.  Advil doesn’t help. Only sleep does — days and days of extra sleep.

The thing is (the pain aside), a lot of the behavioral problems that come up are a result of how I perceive myself in relation to the rest of the world. Yes, I’m emotionally volatile. Yes, I’m losing it when I should be keeing cool, but it’s not so much that I am in trouble over things I’m doing — the real trouble happens and I get bent out of shape, when I misinterpret what I’m doing. I assume that because I’m having problems keeping things straight in my head and I’ve gotten turned around, that I’m screwing up (yet again) and I’m a mess, I’m broken, I’m damaged, I’ll never amount to anything, yada-yada-yada-yada-yada-yada-yada-yada-yada… an unbelievable amount of agitation results, which feeds back into the insomnia/fatigue loop. And that just makes my behavioral issues worse.

I’ve been seeing this more and more, lately, as my sleeping habits have deteriorated. They truly have. It’s been very fun and exciting to do things late into the night (as in, after 10 p.m.), but it’s cost me dearly, in terms of peace of mind, not to mention being able to deal effectively with increasing demands and challenges.

Stop the madness!

Seriously.

So, I have re-prioritized rest. I’ve bumped it up to the top of the heap. And I’ve made some small but important adjustments in how I do my work, so I have a better handle on things.

Objectively speaking, I’ve actually been dealing with some of the challenges and demands quite well — but because I’m so tired, I can’t really accurately assess how well I’m doing. So, when I feel like I’m having trouble, I assume I’m not doing well at all… and my successes are nearly lost on me. Unless someone can talk me through them. Like my spouse or my neuropsych.

Speaking of my neuropsych, I had a really great meeting with them  last night (thank heavens), on the spur of the moment. I was in town, they were in town, they had an opening in their schedule, and I had a sudden cancellation on mine. So, we managed to meet for a few hours. And after checking in with them about some recent experiences that had thrown me for a loop, I realized that I had actually done extremely well under very demanding and challenging circumstances. The biggest hurdle in all of it, was me being so tired that I couldn’t think clearly about what had really happened that was good.

I was so tired, nothing seemed good. But it actually was. So, my neuropsych talked me back from the brink of despair. And then I went home and  got to bed at a decent hour — 9:30 p.m., thank you very much! — and I woke on my own after 8 solid hours.

Wonder of wonders.

And suddenly, the world looked a lot better. The “mental illness” subsided, my mood disorder cleared up, my crappy attitude and biting self-criticism subsided, and I was able to get on with my life. Like a normal person.

And I’m back on track with watching myself more closely than I had been, taking my issues one at a time through the course of each day, and addressing the real underlying problems when they come up, so I can get on with my life, despite them. I’ve refined my daily log for what I have planned and what I really do. I’ve become quite diligent about keeping notes on my daily activities, and now I’m furthering that even more with a better kind of journal that helps me a lot.  Tracking my activities and the results is one sure way to see how I’m doing, from day to day. My brain will tell me any number of things about how I’m doing — many of which may in fact be untrue. But if I’ve got my notes, I can see for myself how I’m doing.

Onward…

Okay, FINE, I’ll self-assess!

Well, the long weekend is almost over, and I’ve been spending the past few hours logging my experiences from last week, so I can share them with my neuropsych this coming week.

I keep daily logs of the things I plan to do, and I also track my successes/failures when all is said and done. Being the busy (compulsive?) individual that I am, I usually have a full page, each day. I use color highlighters to mark the things I get right and the things I don’t. Green means success, pink (which I hate) means failure because of my cognitive-behavioral/physical issues, and orange means something got in the way or I didn’t complete things for a benign reason (like I ran out of time).

I also have a log in my computer (aren’t spreadsheets wonderful?) where I list the things I’ve planned to do, and how they turned out, and what the reasons for my successes/failures were. I have been typing in my last few days’ worth of experiences, and as usual it’s a real eye-opener.

I tend to get very caught up in the moment… lose track of things I was working on a few hours or a few days before hand. I am very present-oriented, as well as future-oriented. I guess enough unpleasant, confusing mess-ups have happened in my recent and distant past, that I just got in the habit of not paying any more mind to experiences, once they’re over.

That’s fine, if I don’t care to ever learn from my past… but these days, I’m feeling more and more like I really need to pay attention to my lessons, get what I can out of them, and make a lot of effort to incorporate them into my life.

So, I’ve been logging my experiences into my computer log, so I can take them with me and discuss them with my neuropsych this coming week. It’s funny — they have been so supportive and encouraging and impressed wtih my progress… I’ve kind of gotten the impression that they don’t fully appreciate the range of my difficulties and how they get in my way.

Good heavens, but I keep busy! Good grief, should I say… My hands are tired from doing three pages’ worth, and my head is spinning with what I’m seeing. Basically, the pattern that’s emerging is me jumping around from thing to thing, not completing some important tasks, and running off to do side projects for no other reason than that I can.

On the other hand, I have made some really substantial progres, here and there. But I haven’t taken the time to really sit with it and appreciate it. Things like me getting my 2010 priorities in order… cleaning my study at last… doing my daily exercise… and taking really good care of my house… These are very important things I’ve accomplished in the past week, and I need to pay attention to them. I need to give myself some props.

I also need to give myself a good swift kick in the rear, because there are a lot of things I’ve let slide. It’s not enough for me to make a list in the morning, check some things off, and then not pay any more attention to it, after 2 p.m., which is my pattern. I really need to stay on top of myself, or I’m going to get hopelessly swamped in partially-finished projects. And I’m also running the real risk of taking on too much — yet again — which can spell disaster when it all comes to a head, and the non-essential things are crowding out the essential ones.

I must admit, I hate to self-assess. It’s difficult and painful and awkward and it reminds me of all the problems I have.

But it’s a new year, and I really have no choice but to change my dissipating ways. I need to rein myself in and buckle down to get done what I need to get done — what I’ve promised my boss I’d get done.

I expect to feel like crap for another day or so. I always feel terrible about myself and my life, when I start self-assessing. It’s so uncomfortable for me to see all the things that are amiss in my life… all the things that need fixing. But what’s the alternative? Leave them alone, and leave myself to rot? Don’t think so.

I can do better than that.

And so I shall.

Solutions-Oriented TBI Recovery

I’ve been having a pretty good month, so far. Actually, the goodness goes  back to late November, when I planned and completed a very successful Thanksgiving. It wasn’t successful in the “worldly” sense — it was successful interpersonally and individually. I managed to make it through the holiday without a meltdown, without a breakdown, without total loss of all control, and with a presence with those I was with that I cannot remember ever having had at that time of year.

Now the next spate of holiday activity is coming up. Two families in several states await the pilgrimage of my spouse and myself. It’s going to be even more rigorous than Thanksgiving. Twice as much driving, four times as many families, probably about 20 times as much activity. And this, over the Christmas “break” when everyone will probably be on the road.

I’m being smart about it, planning ahead, pacing myself… Not taking on too, too much at work, but managing (sometimes just barely) to keep up with my workload. Just thinking about it all makes me flush with excitement/dread. But that’s the nature of the game we play at the company where I work, so if I don’t like it, it’s my own danged fault for staying in it… or it’s up to me to change it.

I’ve  been having some pretty amazing revelations, too, with regard to my recovery. I’m reading again, which is a miracle in itself. I’m also able to sleep 8 hours at a stretch, now and then (last night was such a night). And I’m actually awake before 11 a.m., thanks to the daily wake-up exercise routine. I’ve also discovered that, even if I am planning on doing some exercise in the morning — like outside chores that promise to wipe me out — I still need to do my exercise routine to wake myself up, before I do anything else. No compromises, no shortcuts.

My neuropsych has been, well, psyched about my recent breakthroughs. The fact that I’ve been able to manage several extremely challenging travel/family situations in the past five months… the tremendous progress I’ve been making at work… the exercise and the better choices… the difference in my outlook and how I do things, each and every day… not to mention the revelations that I’ve had about what I’m truly capable of… it’s just floored them. Part of me wonders if they’re really amazed, or if they’re just trying to encourage me. But I trust them and their judgment, and I believe them when they say they’re just amazed at my progress.

It’s true. I have been making incredible progress. I have Give Back Orlando to thank for that, as well as my neuropsych and the materials I’ve been reading. One of the main ingredients that’s been critical in my rebound from teetering on the brink of financial ruin and homelessness (I’m not kidding), a few years back, has been the approach I’ve taken to my recovery. Ever since I realized I needed to recover — to rebound — from my fall in 2004… not to mention a lifetime of multiple periodic concussions… I’ve been focused not only on understanding the nature of my issues, but also devising solutions for the issues that are tripping me up.

Indeed, when I look back at my concussive life — starting when I was a young kid, on up through my late 30’s — I can see a pattern, an approach, that has served me well in rebounding from my falls and accidents and knock-out attacks. That pattern/approach was temporarily hidden from me, after my fall in 2004, so I literally forgot how to recover. But when I started getting back, I started to get back into this pattern, and it is helping me as much now — probably more, since I understand the underlying issues — as it did when I was trying to get through my childhood and adolescence and young adulthood after my different injuries.

I could post a laundry list of all my issues — and I probably will in a later post — but I haven’t got time for that right now. Suffice it to say, I’ve got a raft of them. Tens of them. And they cause my trouble on a daily basis. Now, looking at them all by themselves (which I tried doing, a few years back) just gets way too depressing. Seeing my issues for what they are — serious and threatening to my way of life and everything I hold dear — is necessary, true. But if I’m going to recover and rebound, I have to focus not on the problems they cause me, but the solutions I develop to deal with them.

If you’re interested in figuring out how to recover and rebound from your own issues — whether they’re TBI-related or some other sort of cognitive-behavioral bugaboo, like PTSD — I’m happy to share what I do — and have done for as long as I can remember — to get a handle on my issues and overcome them, day after day. (Note: Clearly, I’m human, and some days are better than others, but this is what works best for me — and I have a very successful and fulfilled life to show for it.)

Here’s the approach I take:

  1. I figure out what I want to do. I establish a goal or a desire I wish to fulfill— Like getting out of the house in time to make it to work by 9:30 a.m. I write down what I’m going to do.
  2. I plan my approach and try to prepare as best I can — I collect everything I’ll need for the day, the night before, set my clock early enough to get up, and talk myself through what I’m going to be doing to get out the door at a decent hour. I write down the steps I’m going to follow, in the order and time I plan to follow them.
  3. When the time comes to accomplish my goal, I make a point of focusing completely on it, and I do my utmost to achieve it. I also write down the things I did, and if I don’t make my own goal, I write that down, too, and make a brief note of why it didn’t happen. — As in, I get myself up, do my exercise, and prep for the day. I make a note of what I did all along the way — not lots of notes, but little notes so I’ll remember later. If I can’t manage to get out the door, I make a note of why that was (such as, I miscalculated the amount of time it would take me to eat breakfast, or I forgot that I needed to take out the trash and clean out the back of my car) so I can go back and think about it later.
  4. Over the course of the day, I continue to write down the things I am doing, if they are working or not, and I also look back at how my day started, to put it all in context. If my late morning arrival at work threw off the rest of my day, I can see how it all comes together, and I can also shift my schedule a little bit (like take some things off my plate) so I can catch up with myself again.
  5. At the end of the day, I take a look at how the day went, and I make a note (mental and written) about the things that stopped me from achieving what I wanted to do. I think about this as I plan my next day — if I’m not too tired, I can sometimes head future problems off at the pass. For example, if I was late getting out the door on that morning and it screwed up my day, I can look at what I’ve got going on the next morning, and make changes accordingly. Like double-check my list of things to do, and do them ahead of time. Or set my clock earlier, so I have more time to get things done.

I do this every day, just about. Yesterday, I was really late for work, and I didn’t get to do some things I was  supposed to, because I had forgotten to do some essential chores the night before. I realized, over the course of the day, that I was very tired from a full and active weekend, and I did not rest enough over the past two days. I also realized that when I get tired, I tend to push myself even harder, so I needed to not drive into work today, but work from home. Working from home lets me move at my own pace AND it lets me get an afternoon nap in, which is very important — especially with the holidays coming up.

And all along, I consult my notes. I don’t try to make them all neat, but I do try to make them legible and leave room for other notes in the margins ans I go through my day. Making notes of why things didn’t work out is actually more for consideration throughout the course of the day. I don’t spend a huge amount of time with neatness and completeness. The point of writing it down is more for developing mindfulness around the things I did not manage to get done when I planned to. And giving me a point of reference, when I’m starting to get overwhelmed, as I tend to do.

All in all, the system works for me. It’s solutions-oriented, and the only reason I pay attention to my problems, is so that I can overcome them. I refuse to be held back by these issues, which can be dealt with systematically and logically and logistically. If I have certain problems with fatigue and overwhelm, I can take steps to head those problems off at the pass, or address them in the moment they come up.

This orientation towards goal-oriented solutions is the only way to go for me. It puts my issues in a context that is empowering, rather than defeatist. It also cuts them down to size, by breaking them into smaller and smaller pieces, which I can take, one at a time, to overcome them. When I look at the mammoth iceberg of issues I have — all together at one time — it quickly becomes overwhelming. But if  I break them down into “bite-sized” pieces and tackle each one at a time, AND I attack them with the purpose of achieving the goals I set for myself each day, I can make some real progress.

And I have. And I continue to. Almost by accident — but with a lot of great help from a few key resources — I have come up with a blueprint for addressing my TBI issues, one at a time. And it works. The proof is in my life, which just keeps getting better.

What I do, versus who I am – TBI and Behavior Issues

I have been giving a lot of thought to behavior issues that arise as a result of TBI. Discussing my “eventful” childhood with my parents, in light of the concussions I experienced, brought up a lot of old memories about the bad behavior I exhibited, time and time again.

At the same time, I’ve been meeting with my neuropsychologist, who has been trying to explain to me that relatively speaking, the neurological after-effects of my TBIs are not so terribly severe. For the most part, I have a lot going for me, and I score well in key areas. I do have a few significant areas of difficulty, but I’m really not in terrible shape, neurologically speaking.

I’m still trying to get my head around it. Maybe I’m being dense, but it’s hard for me to see how little is wrong with me.

Because I struggle. Oh, how I struggle. The fact that I’ve been up since 1:30 — wide awake from worry and pain — is evidence thereof. Now, part of it may be the fact that I’m a highly sensitive individual with a lot of life and curiosity and adventurousness in me… which tends to put me on a collision course with the less desirable parts of human experience. A lot of it may be due to that, in fact. But it certainly doesn’t help that my memory leaves a lot to be desired, my processing speed isn’t as fast as I’d like, and I tend to get overwhelmed and melt down.

I don’t want to make more of my situation than need be, and I certainly don’t want to hold myself back in life  by focusing on my limits, rather than my strengths. I just need to understand why it is that I have such a hard time with things that others seem to be fine with. What, in fact, is holding me back?

All things considered, I think most of my day-to-day issues are behavior-related, versus purely neurological. I have had a bunch of head injuries, it’s true, but my MRI and EEG both came back looking peachy, and that doesn’t seem to correlate with the difficulties I have. Indeed, the problems I’ve got with insomnia, anger management, becoming quickly fatigued, trouble getting started, trouble reading, getting turned around and overwhelmed, saying the wrong things and doing things differently than I’d like, seem more behavioral than cognitive.

Well, it’s 4:30 a.m. and I’ve been up for three hours. I’m bushed and I need to sleep. So, for now I’ll just share a number of links I’ve found interesting and useful in understanding tbi and behavior:

One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”