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/

Advertisements

Find a New Neuropsych Step #2: Be clear about what I want to achieve from working with someone.

checklistStep #2 in finding a new neuropsychologist is : Be clear about what I want to achieve from working with someone. I need to make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.

The last time I was looking for help for my persistent TBI/concussion issues, back in 2008, I did a lot of things in ways that kept me from getting help. One of those things was bombarding potential docs with a whole binder full of information about my history, my present, and more. It was seriously a sheaf of papers I had to hold together with a binder clip. And when I showed up to talk  to neuros about my symptoms, they just looked at me like I was insane.

Because I sort of was. TBI had so scrambled my brain, had so confused my ability to think clearly about, well, anything, and it had really decimated my ability to see the forest rather than all the trees. It also exaggerated just about any perception I had, distorting it like a funhouse mirror. So, of course I looked and sounded a little crazy. Of course I did.

And accordingly, I was dismissed and treated like a malingering drug-seeker — and I didn’t get any help at all.

So, I had to take care of it, myself.

This time, I don’t want to repeat that, so while I am collecting details on my current situation, I’m thinking about how that actually affects my functioning, what impact it has to myself and my environment, and how I want it to be. Cliff notes. Boil it down. Now I can actually boil things down to their most basic essence, so I’m going to do that.

This morning, I am extremely dizzy & lightheaded, feel like I’m going to fall over, my head feels like it’s in a slowly tightening vice, and I’m pretty foggy today. I’m having a heck of a time getting started. It’s holding me back, because I need to be up and at ’em, not puttering around the house, fiddling with this and that. I know better. I’m just having trouble doing better, and I’d like to fix that.

I really need to be “on”, these days, because my year-end self-assessment and performance reviews are happening now. Unlike days of yore, when your boss rated you, nowadays we have to do assessments on our activities and report on what we’ve done. This is one of those times when I can’t fake my way through — I need to be clear and concise, and I need to represent myself well. If I’m foggy and can’t get started (I’ve had real problems with initiation for a couple months, now), I can’t do my level best on my self-assessments or my future goals. I’ve struggled with just getting myself to figure out the self-report form, and I’ve messed up a couple times, putting comments in the wrong fields (of course, it would be nice if the app let me move things around, but no).

And these difficulties directly impact my ability to earn a good living, advance in my career, and be the best that I can be.

So, in order to get help with this, I need to be able to succinctly state the issues I’m having, how they are affecting me, and state clearly what I want to have happen instead. I need to give enough information that it makes sense to someone, but not so much that they glaze over.

I also need to use these notes to practice talking to someone about my issues, so I can communicate clearly and have all the right information to give them. I’ll use my notes as talking points — and possibly make up a separate bullet point list for myself — no, it will be more helpful if I am referring to a copy of what I give to the other person.

Armed with this tool, I hope to find someone to help me “hack” these problems. That would be great.

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

Better Living Habits to Help My Brain Work Better

This just got posted as a comment at  my post about confabulating as a kid

  1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.
  2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.
  3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.
  4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.
  5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.
  6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.
  7. Try to do your most difficult and important work early in the day.
  8. Try to avoid working under tension as much as possible, as that burns extra energy.
  9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.
  10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.
  11. Getting some physical exercise every day seems to help the brain to work better.

No one has a clue how hard this is for me

Even I don’t, sometimes.

Seriously. I walk through my days, going about my regular business, living my life, interacting with people, doing what I do, making mistakes, making it right… working (hard) to keep up. And I do manage to keep up. Most of the time.

At least, that’s how it looks on the outside. I’ve learned, over years, to present in a certain way… to project a certain image… to do a passable job of fitting in, by mirroring the mannerisms and “social pacing” of people around me. And it works. I had to figure it out by trial-and-error, but I did eventually figure it out.

In my early childhood, when I was first learning about how to live outside my parents’ house — in school, especially — I had a very hard time fitting into my surroundings. My early grade-school years were rocky and rough, and I went through a lot of bullying and teasing and marginalization. I also had a very, very hard time dealing with academic requirements. I could pretty much get by, but it was — again — trial and error. I remember working so very, very hard to make my teachers happy… without fully understanding why they were asking me to learn certain things and complete certain lessons.

I think part of the problem was that, despite having a hard time keeping up with what was going on around me, I was ahead of the kids around me, subject-wise. I grew up in a family that valued education and spent a lot of time exploring the world of ideas. My parents were — and still are — very well read, and my grandparents were experts in their fields. I was well accustomed to sitting around talking about complex subjects… more comfortable doing that, in fact, than spending time playing with the kids around me.

And it was awkward. Very awkward for everyone. At least, I think it was. I didn’t understand my peers very well, and they didn’t seem to understand me at all. Or maybe my perceptions were skewed because of my TBIs — poor judgment, slowed information processing, and misperception of the actions and/or intentions of others are all hallmarks of TBI. Maybe everyone was fine with me; I just wasn’t fine with them (or myself).

Anyway, I don’t want to harp on all my difficulties. Let’s just say my childhood was somewhat challenging.

All that started to change, however, when I started getting connected with kids who were several years older than me. My family had moved to a new area, and we had started attending a new church. That church did not have a very large concentration of kids exactly my age — they were either several years older than me or several years younger. My parents talked to the youth director and managed to get me “in” with the older kids in the young adult youth group.

I really wasn’t sure about it, when I started. I was painfully shy — no, shy isn’t the word for it. I was completely out of my depth. All the boys and girls — young men and young women, actually — who were part of the youth group seemed so with it, so together, so … grown up. They seemed like they knew what everyone was saying when they talked, and they seemed to know how to act around other people.

I was amazed. I couldn’t for the life of me figure out how to initiate conversations that weren’t about some academic matter, and I sure as hell didn’t know how to keep a conversation going. I was petrified, the first months I hung out with the other kids. But fortunately, some of the most popular kids in the “gang” at church were second cousins of mine, and they knew me from family reunions. So, I was “in” with the crowd, even when I couldn’t manage to put two words together.

It would be really easy for me to focus on how challenging those years were for me. But I’d rather focus on how much I gained from meeting those challenges head-on, and learning from them. Those several years with the older kids — I spent about 3 years among kids who were several years my senior — taught me volumes about how to make my way in the world. By watching them and seeing how they interacted with others, I was able to model my behavior on something positive — and types of behavior that obviously worked. I watched the kids who were clearly popular and having a great time being alive, and I mirrored their words and actions. I’m sure I looked a bit spastic, at times, tagging along and clumsily imitating everyone at the start, but eventually I learned how to smooth it all out and “deliver a seamless presentation” of the kinds of behavior I saw other people using — that worked well for them in social situations.

I could tell things worked, if people laughed at jokes. I could tell things worked for them, if other people smiled when they approached. I could tell things were “clicking” socially, if everyone was relaxed and enjoying each others’ company. It probably sounds pretty remedial and basic, but that’s how I learned. And I learned pretty quickly, too — so long as I could be a part of the group, but still be able to withdraw, now and then, when I got overwhelmed. Because I was with kids who were some years older than me, I was able to get “special dispensation” because I was younger. I was “just a kid” so I was allowed to mess up, now and then. Not all the time, but they tended to cut me some slack, which was helpful.

The fact that all this took place in a church environment, where there were very strict rules about how you did and did not behave was very helpful also. All the boys were well-behaved, and all the girls kept to very high standards of behavior. Even though a lot of us eventually left the church and went our own ways, far from organized religion, the fact that there were clear guidelines in place for us to follow made it pretty straightforward for me to figure out how I should — and should not — behave around others. The kids who were ahead of me modeled acceptable behavior, and I followed their example. I was part of a “gang” — but the gang was all good Christian kids, so I had the benefit of being in a group of pressuring peers who pressured me in directions that did not lead towards drugs, alcohol, petty crime, and teen sex.  (That pressure took place in the other “gangs” I ran with, several years later, in school and at jobs I held.)

During those early teen years in the church youth group, I learned how to integrate socially through the various activities we had — Sunday School, prayer meetings, weeknight services, organized youth group activities, like trips and outings, Bible quiz team, and countless other get-togethers that were organized by the youth leaders. They really did have a good program, I realize in retrospect, and I benefitted from it a lot. Being able to be around kids who were older than me gave me license to just be who and what I was — a little dorky, a little geeky, gangly and awkward and prone to say dumb things that were out of context — and be accepted, anyway, because I was young. I don’t remember being stigmatized, probably because it was generally expected that I was supposed to be different — but that was because of my age, not because I was a queer little brain-damaged freak who couldn’t fit in with my peer group.

What a relief it was, to be allowed to be different! I had been battling against my social surroundings for years, but that had gotten me nowhere. And I mean, nowhere. Standing out as being different (which was my “default setting”), had resulted in a lot of bullying, ridicule, and general hardship for me. It had also not helped my academic performance or my general ability to get by in the world. But being able to hang out with kids who were not only older than me and showed me how to behave, but being given some leeway with how I behaved, totally took the pressure off.

I was finally able to relax, socially. And I was able to learn. I was able to pattern my demeanor after the most socially successful members of the youth group — the guys and gals who were the most capable, the most popular, the smartest, the most respected-by-adults. I’m sure I looked kind of dense, stumbling and bumbling my way after them. But you know what? No matter how dorky I looked around the older kids, when I was around my own peer group, those behaviors and mannerisms made me look a lot more mature than I felt. I didn’t need to understand exactly why someone would say certain things (like social pleasantries) or do certain things (like strike up a conversation with people you’ve never met before in your life). I only needed to understand how they did it, and that it worked for them… and perfect my impressions of the most socially successful people I knew.

Granted, my “performance” wasn’t always perfect, and there were a lot of false moves over the years that got me in trouble with older kids and teachers and other authority figures, but you know what? By practicing and practicing and practicing some more… observing carefully when others did things that made them look good… by rehearsing the “role” I wanted to play in the world in the privacy of my own bedroom, out in the woods where I could have some alone-time… by constantly checking and re-checking the results of what I’d done, learning my lessons and “taking my lumps” as I went, I was able to build a really compelling and convincing repertoire of social graces that have stood me in good staid.

Okay, so my parents were probably pretty concerned throughout the course of my life, when I’d spend hours just talking to myself. And I’m sure they’ve often wondered about me walking around having animated, in-depth conversations about topics I’m passionate about… with no one in particular. To this day, I still have extended animated converstions with myself when I’m alone or in the car driving. I do it — and have always done it — to work on my vocal pacing, my delivery, my presentation. I have a role to play in the world, and I know well enough (inside my own woolly head) how hard it can be for me to keep my act together. I get lost all too quickly, so I need to keep my composure skills up, and “running the lines” my life does it for me. This “regular life” stuff doesn’t come easily to me, so I have to work at it, work at it, work at it some more. All the time, whenever I get a chance.

Fortunately, I enjoy it, and when I’m having intense, protracted discussions with myself, pretending to talk to another person — breaking now and then to let “them” get a word in — I’m usually going on about something that captures and holds my interest. So it’s not work as much as it is effortful play. And it pays off.

In countless ways. Can I just tell you, the best validation of my efforts has been all these people telling me, over the course of the past year or so, that they never would have guessed I had a head injury, let alone half a dozen. It never would have occurred to them that I was anything less than perfectly normal. On the outside, then, my presentation is intact. And all my hard work has paid off. The countless hours I’ve spent analyzing my interactions with the world, checking and double-checking the results of my relating to others… the untold time I’ve spent carefully tweaking my demeanor during the course of converstaions… the tricks I’ve picked up about how to interact effectively with others… it’s all paid off. Big time.

Now there are some days, of course, when I feel a lot more like a fraud than I feel functional. I feel like I’m just walking through my days playing a role that has nothing to do with me. I’m sure a lot of people feel that way — especially as they age and start to examine their lives. But with me, it’s especially pronounced, because there are many, many times I say and do things without even thinking about them which don’t sound anything like me, or what interests me, or what I care about. There are times when I’ll get to the end of a conversation or a complex interaction with someone and realize that I have no idea what just happened — I wasn’t even personally involved in the interaction. I didn’t even say what I meant or thought or felt. I just mirrored that other person, without even knowing what I was mirroring. They thought for sure that I agreed with them wholeheartedly and was validating their point of view by repeating it back to them, but I was really just saying and doing the bare minimum to get in and out of the conversation without getting too turned around.

Indeed, this is the great pitfall of this approach, socially successful as it may be: that I can get swept up in a chain of events that I don’t agree with, don’t care about, don’t even want to participate in… because the action is moving a lot faster than my little brain is, and I’ve unconsciously mirrored everyone so well, that they enlisted my help and swept me into their grand designs without my ever consciously assenting to it. And they think that because I’m able to mirror them so well, I’ve consciously chosen the path they’re taking because I’m as totally into it as they are… But I haven’t deliberately chosen.  And I’m not totally into it. I’m totally into nothing more than just participating and navigating the situation successfully enough to not be found out as a head-injured dimwit.

It can be a problem. Especially when I try to slow down the action long enough to say, “Hey – I need a while to think this through before I get involved.” Slowing things down is terribly difficult for me, in the first place, because I tend to be highly impulsive and get swept up into the energy of things. I also hate feeling as slow as I am, and I hate feeling so friggin’ retarded — as in the literal meaning “to be delayed”, which is exactly what I am at times. I have developed an elaborate and effective cover/compensatory strategy for my limitations, and I like how I feel when I’m “under cover”. I like feeling whole and hale and hearty and fast and smooth and with it. I like feeling complete and well-integrated. But when I “buy my cover” and forget that it’s just that — well, things can break down pretty quickly.

I suppose it’s all a balancing act.  There’s no way I’m going to just dispense with my compensatory behaviors — why should I? Everyone needs a little cover, now and then, and plenty of people say “yes-yes-yes” while they’re trying to buy time to think things through on their own, in the privacy of their own heads. But I don’t want to fool myself into thinking that everything is perfectly alright, since I can present well, articulate, keep my act together in very controlled circumstances. I don’t want to fall into the habit of thinking that because I can function very well in a highly structured environment where I’m literally just mimicking people around me and able to perform well as a result, than I can duplicate that same level of effectiveness out on my own.

I’ve tried it, and it doesn’t work. I once thought that my on-the-job skills at my highly routinized, heavily project-managed 9-to-5 position at an established corporation would translate into the same level of effectiveness and success when I started my own company. But I was wrong, and that experiment ended very, very badly. I’m still picking up the pieces.

I once thought that because I saw other people conducting workshops and I understood the form and structure of them, that I could duplicate their efforts and do just as well. What happened was, I got 10 minutes into the workshop and lost control of the “flow” and ended up riding a wild bucking bronco of a workshop where everyone talked out of turn and wouldn’t stay on-topic — very similar to what happens inside my head when I’m tired and overwhelmed.

I once thought that because I had worked in financial services for many years, and I had a burning interest in financial planning, that I could and should become a financial planner. But I ended up enrolling in a program for a bunch of money and then was unable to even finish two of the six courses. I was also unable to get more than a C grade in the two tests I took. And I had no idea why! As so many times in my past, I actually forgot about the program for a while and wandered off to do other things… and it didn’t fully sink in that I was supposed to be working on it until I got a notice that I had all of six… then three months left to complete the 18-month course. It slipped my mind, for the most part… and I couldn’t finish the program. What could — and should — have been a simple matter for me turned out to be a whole lot more complicated than I thought it would be. And I was a whole lot less up to the task, than I had assumed.

I once thought that because I had worked with many different kinds of lawyers for many years, that I could read and analyze and understand important legal documents for my family, but I ended up really turned around and confused, and if it weren’t for the fact that I had a good lawyer waiting in the wings, I could have really screwed things up.

The wild thing was — I had gotten myself into all these messes at the urging of others around me. Others who were so very, very sure that I could handle myself perfectly well, that I was perfectly capable, that I was perfectly equipped to deal with all of this… who had no idea at the time (as I) that there were some serious neurological impairments holding me back. There weren’t a lot, but there were enough.

And as a result, I have danced on the edge of disaster repeatedly throughout the course of my adulthood — and I’m still running into instances where I overestimate my capabilities. They’re less and less pronounced, and I’m getting more acclimated to “quality controlling” my assumptions, but the risk still exists that I might overreach and not realize I need to take special care to compensate for my limits.

I suspect that these may be good examples of anosognosic hazard — having lacking self-awareness get in the way of living your life. I know that they’re good examples of how buying my own cover can get me into trouble.

The thing is, I don’t feel like being disabled, I don’t feel like being head-injured, I don’t feel like making special exceptions for myself. But when I don’t at least consider that my broken brain may be complicating my life needlessly… getting me into trouble, yet again… well, the feeling of being in hot water is far worse than the feeling of tending to my relatively few special needs.

I really, really hate having to consider how difficult some things are for me. I detest having to bumble and fumble and stumble my way through situations until I figure out how to handle them. I cannot stand having trouble with sequential steps and not being able to remember stuff that “should” come easily to me. Most of all, I hate the idea of revealing to others how hard I have to work to do the most basic of things, like getting up and going through my routine each morning, and actually getting to work on time. It’s embarrassing, it’s disconcerting, it’s a total downer. But that’s how it is.

And even if I don’t show it to everyone else, it’s important that I not lose sight of it inside my own head.

‘Cause you can’t fix something, if you don’t know it’s broken.

I was afraid this would happen…

I am tired. I am so tired, in fact, that I cannot rest. It’s not good. I haven’t had 8 uninterrupted hours of sleep in I don’t know how long. I haven’t had seven hours at a time in a while, either. Right now, I’m averaging about 6 to 6-1/2 hours of sleep a night, which is not good.

I’ve been going on adrenaline for a week, now, but it’s taking a toll. I spent the long weekend — all three beautiful days of it — laid up in the house, fighting off an infection that really dragged me down. What a waste. Then again, I did need to rest, so it was probably my body’s way of getting me off my feet.

Things have been going pretty well at work. It’s a mixed bag. On the one hand, I’m pretty freaked out at how much I have to learn. A lot of this is new to me — the aspects of this advanced technology I have to master are specific to the company I’m at, so I have to learn it even more specifically. And there’s a lot going on, so I have to learn a wide range of of specifics. Part of me is petrified. I really want to do my best at this job, and I will. But what if my best is not enough? What if I’m not nearly as proficient as I think I am?

It’s happened before. Lots of times. My brain has told the rest of me that it “got it” just fine, when it was way out in left field. It’s been a recurring problem.

Another issue is that I’m not following what people are saying to me. I’ll be sitting with someone, going over issues with them, and all of a sudden, I’ll notice that I am not understanding a word they’re saying to me. Somewhere, back a few minutes before (and I can’t remember when), I stopped listening. My brain quit on me. It just dropped out and ceased to function. Bye-bye. This is not good. I need to be able to pay attention when I’m talking to people. I need to be able to listen to them the whole way through. And I need to remember what they said to me later on.

This has me very concerned. Very worried. Very uptight. I’m getting that sick, sinking feeling in my stomach around my inadequacies and shortcomings. And I’m starting to get really worried that this is going to impact my ability to do my job — and my reputation. It feels like people I’m working with are noticing that I’m spacing out… that I’m getting lost. And my interactions with them are faltering, especially later in the day.

The people who brought me on board took a bit of a gamble with me, when they hired me. They brought me on based on what they knew of me in the late 1990’s. It’s now almost 10 years later, and I’m trading on a ten-year-old reputation. I can’t let these people down. I can’t let these people down. I can’t embarrass myself. I just can’t.

What to do…

Ah-ha! I’ve got it! I’m brilliant! I have a solution! It’s so common-sense, it’s almost frightening — use “assistive technoloy” I have (literally) at my fingertips, every day: My laptop.

My laptop is my lifeline at work. It plugs me into the network, it connects me with people near and far, so I can do my job. It’s my soother — the rhythmic action of typing really chills me out. And it also paces me, makes me do things systematically. And it’s a great prop for me to hold onto, whenever I’m getting tweaked and nervous and agitated.

I’m going to take my laptop with me, whenever I go out and consult with people who need my assistance, and I’ll use it to record what’s going on in our conversation. I’ll take my laptop with me to meetings, and I’ll have it logged into the network to check on various pieces of information that come up. I’ll always have it with me, and I’ll make a point of “capturing information” at the time I’m meeting with people, whether it’s one-on-one, or in a meeting. This is brilliant on a number of levels.

First, it makes me look like I mean business. I do mean business, but having my laptop with me bumps up my appearance by several orders. It makes me look like I take the situation seriously, by getting a computer involved. It’s true — I do take the situation(s) very seriously, and this communiates that to others.

Second, it slows down the action. Typing takes time to do. The computer has to run its programs, which tend to slow things down. Reviewing my notes in the moment also takes time. It basically keeps the action from getting way out of hand, and when it does, it gives me a great reason to circle back and recap. I’ve noticed that when I’m talking to people, I’ve been losing information, which is not good — and they’re smart, so they see it. Now, if I can type while I’m talking, I can find some middle way to keep up and get others to slow down. So many people I work with are very verbal, very interactive, and when we start writing things up, they have to slow down.

In a way, we’re inversely speedy — They’re as fast when they’re talking, as I am fast when I’m typing. They’re as slow when I’m typing, as I am when they’re talking. So, if I can type things up, I force them to slow down, which has to start happening.

Third, it speeds up my interaction. For some reason, when I’m typing things up and “thinking on paper or on-screen” I’m better able to collect my thoughts and communicate. I see issues and come up with ideas that are buried in the information. Writing things up and typing them out helps my brain organize the ideas that just get jumbled around when I’m talking and listening to people talk. I can really fly. And I type very fast, which makes me look good. I look even faster than I am, because I’m typing as I talk — highlighting my skills and abilities, rather than getting bogged down in my limitations.

Fourth, it creates a record for me to refer to. I can not only keep up while I’m meeting with someone, but it captures what we discuss, so I can come back to it later. This is huge with me. I lose so much, when I’m talking to people, and what I do retain, tends to get “filed” in different places in my brain.

The inside of my head feels a bit like my home office looks — papers and books all over the place, artwork and supplies and various items left here and there, in no particular order. Some of the mess is hygienic — just plain laziness keeping me from putting things in order. But some of it is necessary — one of my vexations is “out of sight, out of mind” where I literally lose things I cannot see. I forget that they exist, and then they get lost for long times, when I really need to keep them in mind. Like one of my W2’s that went missing in the past month. I distinctly remember getting it in the mail and putting it with my tax forms. But now it’s gone. And I have to file for an extension and request another copy. I searched high and low for it, but it’s nowhere to be seen, and I may have accidentally thrown it away. There’s a very good chance I did just that.

To avoid completely screwing up my new job and pissing everyone off and wrecking my future chances at employment, I’m going to just write everything up for myself — and others, so I have it to refer to. Just because my working memory is for sh*t, doesn’t mean my career needs to be trashed

Fifth, it chills me out with the typing. Something about the rhythmic tap-tap-tap soothes me and quiets my nerves. It’s an outlet for my nervous energy, I suppose. And I’m notorious “tapper”, anyway. For some reason, I tend to tap away at things, when I’m nervous. So, typing gives me a way to get that out of my system in a productive and positive way.

Sixth, it helps me think better. I do so much better in writing, than in speaking, so why not make that work for me? Writing things down lets me process information more quickly. And my typing is way faster than my handwriting — and it’s easier to read — so what I come up with is shareable. I can seriously come up with some great solutions when I’m working on-screen. I don’t know what I did before I had computers to help me out. Actually, I do know what I did — I floundered and foundered and made a mess of things. I made plenty of notes that were no use to anyone, including myself. Something about the keyboard helps me think more clearly. That’s a good thing.

So, I don’t need to get all tweaked and freaked out over the difficulties I’ve been having with listening to people. I work in technology, with computers. I use a laptop at work. I can use that laptop over and above its customary use by others. And I can make it work for me in lots of new ways.

This is good. This is so very good. Not only is it a workable, pragmatic solution, but it takes the pressure off my worried brain that has been sweating big-time over these difficulties. One less thing to worry about. Lots less things to worry about.

Now, I just need to take care of my wrists.

And make sure I start getting to bed sooner each night. That part is critical.

Disaster at Sea – My ill-fated encounter with “Life of Pi”

Some years back, my parents gave me the book Life of Pi for a present. It’s the story about a guy from India whose ship goes down at sea, and he ends up in a lifeboat at sea with a bunch of wild animals (that had been on the ship) with him in the boat, and how he manages to survive the voyage with a tiger on board. I guess my folks thought I would enjoy it, since I work in technology and I have a lot of dealings with folks from India on a regular basis. Plus, it was full of interesting facts about animals and zoos and …  I’m not sure what else, because I couldn’t finish the book. Bottom line is, it was just the kind of book I loved as a kid, and they seemed to think I’d really get a kick out of it.

In retrospect, some Benadryl would have done me more good in improving the quality of my life. I know my folks were only trying to help me entertain myself, but my attempt at reading the book — about a year after my fall in 2004 — was so ill-fated, it stands as an excellent example of what TBI has done to my thought process and memory… and how that affects my ability to read, remember, and make progress with written material. It also highlights how TBI has utterly stripped me of one of the great joys of my past life — engrossing, fact-filled fiction that educates as well as entertains.

If you’ve read Life of Pi, you know that it is rich in detail and the action is pretty cerebral — it’s perfect for my parents, who are very heady types and love to noodle around with ideas that intrigue them. It used to be perfect for me, too, but from my very first attempt at reading the book, it became pretty clear that something was different with me. I started reading and got pulled into the backstory… the early years of the protagonist in India, his upbringing, his experiences, and how he ended up on a ship with a bunch of animals on it.

I did prett well for the first 20 pages or so, but I found that the farther into the book I got, the more turned around I got. I thought I was following, but things were starting to not make much sense. There’s a lot of information in there about animals and India and zoos, and the action switches between a lifeboat at sea and a house in — I think — Toronto, Canada. And the more information that was packed into the storyline… the more references there were to past info that I “should have” remembered… the more confused and frustrated I got.

Once upon a time, I would have really thrived on this sort of writing. It read like a wave of accumulating detail, each page building on past pages of information, insight, cross-reference, and so on. Talk about a recipe for TBI disaster! Before long, I was totally lost. I couldn’t keep track of who was doing/saying what… which animals were in the boat… what the main character was talking about… if it was in the present or the past, or wherever. It was the supreme WTF?! reading experience for me, and I had to keep back-tracking to refresh my memory about who was who and what they were doing and why they were doing it. Here’s a picture of how my reading experience went:

Attempt at reading Life of PiIt was really very frustrating. There I was, with this book in hand that my parents were sure I would just love — and just a few years before, I probably would have. But I kept getting so confused and so turned around by the details and losing my place and running out of steam and not being able to concentrate and not being sure what was happening and why I should care… it took me months and months just to move a few pages ahead, and even when I was making good progress, I would have to retrace my steps, check details earlier in the story, and then slog on through, trying to pick up where I’d left off.

Eventually I just gave up and left the book on my bedside stand.

My intention was to pick it up again and finish reading it, but time passed, I lost track of even more details about the story, and ultimately I had to hide the book — out of sight, out of mind — that danged reminder/hint that something was wrong with my brain.

The wild thing was, it didn’t even occur to me that I might be having genuine cognitive problems reading and comprehending and remembering. I thought that the book was the problem. “It just didn’t hold my attention,” I told myself. “It was obscure. Obtuse. Disconnected.” Or somesuch. I didn’t stop to think that it was my brain that was having the problem — it was the book… all about the book. Oh, no – the problem couldn’t possibly be with me!

I spent the next year or so dodging questions from my folks about how I liked the book. I gave them some vague answer — like I have done my entire life, when they’ve asked me about things or tried to talk to me about things that I was foggy or confused about. I didn’t have the heart to tell them that I couldn’t finish it. I couldn’t tell them that I’d become hopelessly lost, a quarter of the way into it, and I just didn’t have the stamina or the patience to slog through the ordeal of  — from the way they described it — a pleasant and entertaining read. I didn’t want them to feel badly — for me, or for themselves. They had been so sure I would love the book, and in a former incarnation, I’m sure I would have. But that kid they once knew was gone, and in their place was this overtired, cranky, easily confused, easily provoked wild person with a hair-trigger temper.

Crazy. Just crazy.

Eventually, I gave the book away — I almost made the mistake of giving it back to them for a holiday present. Thank heavens I at least remembered where the book came from, so I didn’t have to dig myself out of that embarrassing situation. It’s bad enough losing something that meant so much to me once upon a time — my love of fiction — but having to explain it to people who don’t perceive or understand that loss is a recipe for despair. And I’m not going there, if I don’t have to.