One of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.
After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.
Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.
After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.
The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.
Because A) We haven’t had the chance to learn from our last mistakes, and
B) There’s a part of us that actually thrives on those stressful situations.
So, it’s a vicious cycle.
And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.
Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.
I wish all misunderstandings were that easy to fix.
I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, reallyeasy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.
All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.
All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.
Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.
I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.
I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.
Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.
Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.
Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.
Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.
But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.
I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.
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.
Step #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 canactually 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.
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.
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.
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 whyI 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:
Figure out what kind of schedule will work for me, based on my commitments and energy level.
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.
Discuss my notes with my spouse (or someone else whose judgment I trust), to see what they think.
Sleep on it. Pick one. Go see them.
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.
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.
I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day” where Bill Murray’s character goes through the same day over and over and over again.
This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.
One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.
And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.
Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.
Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.
Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.
Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.
Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.
I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.
I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.
Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.
So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.
Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.
Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.
Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.
So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….
Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.
I’ve been here before, I’m sure… now I need to figure out how to make the best of it.
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”.
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.
I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.
I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.
Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.
Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.
The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.
I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.
Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am notexposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.
Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.
So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.
That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.
Anyway, that’s one example of things not working out as planned, and it being okay.
Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.
Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.
So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.
I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.
So, it’s back to using the tools I was working with before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it. I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.
So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.
Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.
Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.